Category: Twenties

Bob Smith-27

Name: Bob Smith
Email: rhsmith215@gmail.com
Age at time of Dissection: 27
Type of Dissection: Ascending
Date of Aortic Dissection: 1 June 2016
Tell Us Your Story: Hello,
Here is a blog with my experience. Thought I’d share. Thanks for your work!

http://myaorticadventure.blogspot.com/

Andrew-26

Hi,

Iliterally almost cried when I found this site. I thought I was just a tiny number in the world of statistics. Though, it seems I am alone no longer. I am so thankful for this site, it has given me hope in planning for a family that I may live long enough to have children and watch them grow old!!

My name is Andrew, I was 26 years old sitting in my office getting ready for a conference call when I felt a burp sensation in my chest. My blood pressure dropped and I almost passed out. The initial tear was massive enough to cause a severe drop. I gathered myself immediately and got myself on the floor in the cardiac position. I told my coworkers to 1)call my parents so I could say good bye and 2)to call 911.

The pain began instantly as my aorta continued to dissect, beginning proximal to the aortic valve dismally up past my aortic arch and partially to my brachiocephalic and common carotid arteries. By the time the end got there, I was seized in pain. The end crew assumed I was having a panic attack and asked me to “can you just get up and walk down the stairs for us?” My feet were off the ground and my hands were crumpled from the seizing. I could barely speak but I got out “are you effing kidding me?”

At the ER I begged for a CT scan between the agony and I waited for 3 hours. Eventually I “bothered other patients” enough they decided to listen to me. Radiology didn’t wait for the ER doctor. Life flight was there in ten minutes.

I was trying to smile and joke with everyone and pass off the seriousness of the situation. It was not taken as well as I had hoped.

I had a full out of body experience on the helicopter though my vitals were bad but stable and I was reportedly conscious the entire time. The experience was quite peaceful.
Has anyone else had this experience?

They landed and they ran to wheel mento the OR no prep and no time to joke about them fixing me up once I saw the bypass machine. I asked them to video tape and they said no then they knocked me out.

I woke up about 26 hours later after a 10 and a half hour surgery, they used deep hypothermia (42degrees) for about 4-6 hours. They induced cerebral silence for 29 minutes and I was completely off the machine for that time. I was ready to leave the hospital 5 days later and I have been wondering how long it will be before I see my grandmother again. We spoke when i was under, I have full confidence that I was gone from this place for some time during everything.

The feeling was quite peaceful again. How can it be my brain if I was turned off? Chemical reactions when there were none going on? I can’t explain these things or why they happened. The doctors could not figure out why this happened, neg marfans, neg connective tissue disorder.

Than you everyone for sharing your stories, I appreciate reading all of them!! It has given me hope for a long life. I GIVE CREDIT TO DR. Chadwick Stouffer and his team at East Tennessee Cardiovacular Surgery Group. They are excellent people. And I was lucky they were available that day, I was told that there is no explanation for me being alive by the time they got me help, except for being fit.

ANDREW

Prerna Sikand-28

Name: Prerna Sikand
Email: prernasikand@gmial.com
Age at time of Dissection: 28
Type of Dissection: Ascending
Date of Aortic Dissection: 27 April 2006
Tell Us Your Story:

Hi well I read articles of survivors on this site and I really wanted to share my experience too. It was Feb’ 2006 when i was undergoing treatment from endocrinologist and he detected my palpatations and was asked to undergo series of tests. Underwent Eco Cradiography, ECG ,MRI , CT Scan and I was diagnosed with Marfan Syndrome and aortic aneurysm. All these terms were like aliens to me.Went through various books regarding this and read on internet too. All this was like …. just don’t know what all was going in my mind that time as i was told surgery is the only option for survival.

In the meantime , had severe stabbing pain in my chest . I was working that time and felt severe pain for about 20 mins. Underwent tests and Aortic dissection took place as aorta had increased a lot and it was on the verge of bursting. I prepared myself and it was d Supreme power with me always and surgery took place in April’2006.I was unconscious for about 5 days and took me round 3-4 months to recover and get back to normal life.

I wasn’t aware of after surgery effects and it was just apt in my case “Ignorance is a Bliss.” I wasn’t aware that open heart surgery just drains out everything from the body and it’s like fresh baby steps again to be taken to restart life. Bentall surgery was done by team of doctors and just couldn’t speak for about a month as surgery did pressure on my vocal chords too. I was in ICU for about 11 days and in room for 10 days, all in total hospitalized for 21 days. As and when strength grew i became better and after full recovery did job again in Jan’ 2007. In fact after recovery went for River rafting in Nov’ 2006 and i was thrilled to be back to my normal life again.
All this phase of life i could just handle with love, affection and support from my family , relatives and friends and of course God’s blessings without whom i would not have been here writing this story. I just pray and wish all other survivors , d very best in life and always be positive in life.

One thing , i truly believe that Its He only who gives us the strength to bear all this. He is the one who has given us such patience and diligence to bear it and face it. God Bless………………….

Jacob Riley-28

Name: Jacob Riley
Email: mollyseliana@gmail.com
Age at time of Dissection: 28
Type of Dissection: Ascending
Date of Aortic Dissection: 15 June 2012
Tell Us Your Story:

This is Jacobs story – by Beth Prophet Jacobs mom.
On the Friday before Father’s Day June 2012 Jacob was off work and planned on going out with his friend, Richy, to celebrate Richy’s birthday.

They picked Jacob up about 7pm and started heading to the restaurant.
Jacob, per Richy, started complaining of a tightness in his chest after he put his seat belt on. Richy thought he was just joking around but then realized he was serious. Jacob asked Richy to take him to the ER because his pain was increasing and had moved down to his lower back.

Richy called us and also Jacob’s wife. When we arrived at the ER we were taken back to the room where Jacob was. He was in some intense pain, shaking and sweating. The physician told us that they were going to do a CT scan to determine what was going on because it didn’t appear that he was having a heart attack. Jacob does have a history of high blood pressure and back problems. While we were waiting for them to take Jacob to Radiology for the CT Jacob asked that the chaplain be called to pray with him/us. They took Jacob for the CT while we waited in the room. The physician came back to the room and told us they were going to air lift Jacob to Loyola Medical Center in Chicago because it appeared that his condition was grave and that they did not have the physicians and or ability to treat his problem.

He told us that it appeared to be a dissection. Jacob was air lifted to Loyola and we drove the 60 miles taking his wife and infant daughter with us. When we reached Loyola Jac ob had already been prepped and the surgery had begun. Jacob had a great physician that performed the surgery, Dr. Eng. The surgery lasted 13 hours. Jacob had to go back into surgery the next day because of a tamponade with evacuation. Jacob spent a month in CICU in critical condition for a long time. He only briefly regained consciousness and then was in and out of consciousness. He had a stroke during surgery.

Dr. Eng told us that he had three sections of dissection and that he focused on the most severe the ascending aortic root. Jacob also had the aortic valved replaced with a mechanical valve because his natural valve could not sustain the heart after the dissection. Jacob also experienced kidney failure and respiratory failure and optic nerve damage to both eyes. He was also placed on a ventilator. Jacob’s body was finally able to hold a decent blood pressure and was moved to a Rehab Center to be weaned from the ventilator. While at this Rehab facility he contracted sepsis because of a dislodged feeding tube.

Jacob was taken to another local hospital close to the Rehab Center and he spent 3 weeks there fighting for his life. His blood pressure was also He was finally sent back to the Rehab center to finish the weaning from the ventilator. Jacob spent another 2 weeks at Rehab was sent back to the hospital because of not being able to control his blood pressure and MRSA. Once he was cleared from the hospital this time, he spent one more week at this Rehab. Jacob was discharged from there and sent to another Rehab Facility for OT and PT. He had to learn how to walk again and learn all ADL’s, speech therapy and psychiatric therapy. Jacob lost 4 months of his life spent in hospitals. He has to be monitored regularly for INR levels, he is legally blind, had a stroke, has only one kidney that functions, has right sided weakness with right foot drop, takes Coumadin along with 5 other medications to control his blood pressure daily.

And his wife left him moved out of state, moved Jacob to her new residence, Jacob had experienced some chest pains while with her, she sent him to the hospital via ambulance, stripped him of all his money and personal belongings and abandoned him at that out of state hospital and now is divorcing him. Jacob lives with us, his parents, and I provide everything for him.

Kathy Whalen’s Son-25

Name: Kathy Whalen
Email: kjojo55@att.net
Age at time of Dissection: 25
Type of Dissection: Ascending
Date of Aortic Dissection: 17 September 2009
Tell Us Your Story:

I t’s really my son’s story. He had severe chest pains eating pizza at Costco one day. Knew something was really wrong and went to the ER room. Thankfully the staff saw the seriousness of the situation and transferred him to a larger hospital.

Turned out, yes, he was having an aortic dissection and needed emergency surgery. They figured out he was suffering from Marfan’s Syndrome and this was one of the classic signs (Marfan’s). He is doing good, taking his medication and trying to get on with his life. I cry when I think how close I came to losing my baby boy.


Thanks to the Drs. at Santa Barbara Cottage Hospital I can talk to and hug my son everyday.

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!)

Ann Busby-29

Name: Ann Busby
Email: Alloriea@aol.com
Age at time of Dissection: 29
Type of Dissection: Ascending
Date of Aortic Dissection: 27 April 2008
Tell Us Your Story:

It’s been just over three years now, and in some ways every year gets easier and in some ways harder. I was at my Grandmas doing things for her when I started having horrible chest pains.I left her house and called my husband, told him something wasn’t right and that I wanted to go to the ER, crazy me I drove myself home to pick him up, then drove to the nearest hospital, the pain just kept getting worse.

Once in the er, I had a bp of 63/44 the nurse said that couldn’t be right, that it had to be faulty equipment, the ekg came back normal and they said that they wanted to do a stress test just to be safe.

Four hours later they came in and said they saw an abnormality on the stress test but that it was most likely breast tissue and that it was nothing to worry about.They decided to admit me for the low blood pressure, they figured three different machines couldn’t be wrong but they had no idea what it was.

The next day was a Monday, I had an echo and ct scan that day, they said there were some things that weren’t normal but that I was really young for anything cardiac, again they decided to keep me. Tuesday I had chest xrays and they thought they saw a mucus plug so they had this nice nurse come in and beat on my back every 6 hours to break it up.Wednesday I had what we thought was a horrible asthma attack, my pulse ox dropped into the 80’s and I was put on a by-pap machine.
.

Thursday the Dr’s came in and said they thought I had pneumonia, that they were going to do some more testing but that they thought I’d be fine, they ordered another ct scan to compare to the first one.

Friday they came in and said that the pneumonia was clearing up, that they’d do more xrays but that they didn’t think there would be any complications, the Dr’s said they’d be off over the weekend and that they’d see me Monday. Saturday and Sunday passed in a blur, xrays every few hours and more of the back pounding.

Monday yes a full week later I started coughing up something that looked a lot like blood, I’d been having horrible back pains but the nurses and Dr’s all said that it was from the hospital bed, but they did another ct scan just to be safe.
Tuesday I was sure it was blood, the Dr finally took me seriously and asked me to get a sample for him, but by this point Tuesday night my chest was so tight I couldn’t cough anything up.

Wednesday they came in and said I was doing better that they’d be sending me home the next day that there were just a couple of tests they needed to run first.

I was taken down for an echo, the tech was totally professional, she did my test and put me in the hall for transport to take back to my room, I heard her on the phone saying “her chest is full of blood, she’s dying you have to do something” I remember feeling so bad for whoever that was.

By the time I got back to my room there was a Dr I hadn’t seen before in my room asking if my husband was coming up that day, it was the first day he hadn’t been there all day, I figured since I was going home the next day he could go ahead and go to work.
He took my phone into the hall to talk to Adam, I should have known then something was really wrong.

He came back in and introduced himself as a Vascular Surgeon, he said I needed surgery but that they weren’t equipped to do it at the hospital I was at, that I was being transferred, they’d wait for my husband if they could but that as soon as I was medicated and stable we were going, the emts were already in the room ready to take me, again when one said to the other “she’s lights and sirens all the way” I should have been scared but I wasn’t.

I didn’t get scared till my husband Adam got there, he started crying when he walked into the room and I knew something was terribly wrong, that’s when the shots of who knows what started flowing.
They sent a Dr and a Nurse in the ambulance with me along with the emt so there wasn’t room for Adam but I could see him through the ambulance window the whole way.

I got to the second hospital and it was like being on er, I was wisked through the er doors and into what I now know was an or, there were Dr’s and Nurses everywhere, I was taken for another ct scan and then back to the OR, the Surgeon looked at me and said “I have one question for you, do you want to live?” I said yes and that’s all I remember except for one partial memory of the Dr saying “we’re loosing her”

I woke up two days later (Friday) to my Surgeon asking me if I could move my fingers and toes and being told I’d need to be sitting up by that afternoon that they’d let me sleep long enough.

I found out that evening that I’d had an Ascending Aortic Dissection that went from the root through the arch, I’d had over two liters of blood in my chest and had had seconds to live whey they got me on bypass, they replaced the aorta through the arch and had done valvoplasty to save the natural valve but that I’d have to have it replaced at some point.

They did what they could to save my life, I’ve been told that I’ll need more surgery and I’m ok with that, I’ve been through the stages of grief for the things I’ll never do, the children I’ll never have and I’m on the other side now, waiting to see what will happen next.

I think about the dissection every day, how can I not, but I think about it differently now, like it’s the start of my new life. I now have two special days, my birthday and my rebirthday, I died and was brought back 5-7-08.
There’s another flap of dissection past the arch that they’re watching very carefully, because of the family history I’ll have it replaced if it hits four rather than the six they normally wait for.

It’s a strange way to live life, but at the same time I’m so grateful, I know how close I came to dying and I want to live more than anything else in the world, I know it sounds cheesy, but even on the bad days the Dr appt days, testing days etc, I’m just soo happy to be alive.

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!)

Charles Gilman-22

Name: Charles Gilman
Email: ccalving@netzero.com
Age at time of Dissection: 22
Type of Dissection: Ascending
Date of Aortic Dissection: 23 April 1998
Tell Us Your Story:

Happened in a car accident. I looked and appeared normal but my mid and lower back were in intense pain. The hospital said it was merely trauma and would go away in a few days. Then I passed out while waiting for my friend (who was driving). They did an x-ray and noticed the cloudy blood flooding my chest. They gave me BP meds, told my family I might die and to say their goodbye’s (without telling me, to keep me from getting excited).

Then I caught a flight to a major hospital in Portland, OR (about 200 miles north from where I was). The docs there told me what happened and that I’ll die if I don’t get the surgery and I might be paralyzed if I do. So, they did it and everything came out fine, except for the chest tube I had when the nurse forgot to put the plug in which gave me a sucking chest wound.
.

It’s been 13 years since and I’ve been on BP meds the whole time but, I ride mountain bikes, run about six miles on most days and feel fine otherwise. I get CT scans done every five years to check for aneurysms. My abdominal aorta has gotten out of sync with my thoracic aorta when climbing above 10,000 feet but, after a few seconds of rest, it goes back to normal.

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!)

Thomas Thibeault- 20

My name is Thomas Thibeault and I am a Division I lacrosse player. One day I went to the gym with my sister to time her sprints, we were both training for the season ahead. I decided to get an easy run in myself. After a couple 300’s I began to feel very tired and very weak. My trainer walked by and said, “Dude, you don’t look so good”. I told him I was fine and that I had been feeling ill the last few days.

To say that I was feeling ill was a huge understatement. I had been having trouble breathing and was coughing non stop. I could hardly even lay on my back. I was also having other issues, for example after a work out one day I could not see out of my right eye for several minutes. Later that day, I had to pick a friend up at the airport and totally forgot where I had parked.


I continued to run and all of the sudden I collapsed. My sister ran for help. A trainer had to smack me to wake me up.

I was rushed to the hospital and I had to undergo a 7 hour surgery. I now have a mechanical valve and am doing okay. I struggle with depression sometimes and I often worry about my health.

The hardest part is that I can no longer play lacrosse. My greatest passion, a passion that has been my life since I was in second grade. I have learned to appreciate my teammates and my family more than ever as I go through this tough recovery.

Contact Thomas

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!)

Federico Story-20

Personal Stories: Federico  Story

My name is Federico and I’m a 20 years old boy from Italy. My health has always been perfect, I run marathons and I played rugby without any problems.

In the night between the 5th and 6th of April 2008, I was home alone and after standing up from my chair I felt a chest pain, and everything was becoming grey to my eyes. I realized I fainted when I woke up again. I still had a stabbing chest pain and both my right arm and leg didn’t answer to my movements. I had never fainted before, so I thought everything would have been ok. I still don’t know where that strength came from, but I stood up, drank an energy drink and called my parents. The situation didn’t seem to get better, so after calling my parents I called for an ambulance, and my sight started to get worse, I was scared to faint again. I would never have called “911”, I would have preferred to wait and see if it would have got better in a few hours, but that pain wasn’t normal.

I was able to knock on my neighbors door just on my left leg and arm , and they gave me some psychological help.


After a little bit the ambulance arrived and after a few minutes, in the hospital I started to feel better, my parents arrived and I started to move my right arm and leg again. The doctors, after a few exams, said that they would have continued the following day since my situation didn’t seem threatening (the clock was around 2am); they told me I could sleep, and they told my parents to go home.

My safety, my angel, the man I will thank for the rest of my life, was an anesthetist who asked himself weather there were any problems with my heart/aorta, so he woke the cardiologist up, who found an aortic dissection in my ascending aorta. My parents were just 1 mile far from home (we live 40 miles away from each other), and didn’t make it on time to come back and speak with me before the surgery.

My parents told me that the doctors began with my surgery around 7am and finished at 11am. They woke me up during the evening, and I could speak and even joke… a lot! (morphine effect?).

After 3 days in hospital I could walk a little bit and I started to feel better and better.

I was sent to a rehabilitation center from April 12th to April 25th. I spent the following weeks at my parent’s house, and on the 12th of May I was ready to go to my house again, and to follow the lectures at my university! Of course I will have to give up playing rugby, but in a few months I will be able to run again!

I’m sorry for all my English errors, but I hope you will find my mail useful! You are doing a great job, carry on!

Yours sincerely,

Federico

Mike Anderson-25

Personal Stories: Mike Anderson

My name is Mike — I’m 25 years old and a student at the University of Minnesota. I started my college career two years late, so I was planning to graduate in December 2007.

April 4, 2007 was the day that changed my life forever. It started just like any other day — attend the lectures, laboratories and then come home and do

homework all night long. This time of year can get very stressful because midterms and project due dates often overlap as finals are just around the corner. I  was definitely feeling the pressure and I had scheduled my time in such a way that if everything went as planned, I would have just enough time to complete everything before the deadlines.

It was about 10:30pm, while I was working at my computer at home, when I felt this sudden pain in my lower jaw. My entire attention was taken from the project I had been working on and was now focused on the pain. I remember thinking to myself, “Where did this pain come from? I’ve never had this happen before. It’s not something that is caused from something external (like someone socking me in the jaw) but something more internal” I couldn’t put my finger on what the cause was. I wasn’t aware of being allergic to anything, but for some reason I was starting to think that I had eaten something that was negatively reacting with me.

The next thought I had was, “Why do these things always come up when I can least afford the time? There is no way I’m going to be able to get anything done with this intense pain so I think I’ll go lie down for a couple of hours and hopefully then I’ll feel better and be able to work on the project after midnight.”


As I got up from my computer, I had another thought: “I should grab my cell phone in case I need to call 9-11”. At the time I didn’t think anything about this particular thought (probably because my jaw hurt so bad!) but looking back on it I find it very interesting because its not something I would normally think to do. I mean, I’ve never called 9-11 in my life, let alone for a trivial jaw ache.

So as I laid in bed, I decided I would give my parents a call to find out if either of them had ever experienced this mysterious jaw pain and what the remedy was. Of course my luck would be that they were out of town so I wasn’t able to reach them on their home phone, so I tried my Dad’s office cell phone (which the chances of being on at 10:30pm were practically zilch) but miracles of all miracles – it was on! I informed them of how I was feeling and asked if they had every felt those symptoms before. Neither of them had and they thought that I was just reacting to the stress of the semester.

We continued talking for a few minutes when a new pain developed in my lower back — just above the hips but in the middle of the back was the greatest concentration of pain — then the pain felt as if it were propagating upwards from that location towards my

shoulder blades where it would move to a region behind my shoulder blades. The pain that I had initially felt in my lower jaw felt as if it were moving upward into my ears. I found it difficult to breathe and was feeling some pain in my abdomen. Now I was scared — something was definitely not right and I needed to get it checked out now! I told my parents I was going to call for an ambulance and that I would talk to them later.

Within just a few minutes of calling 9-11, there were four EMS technicians in my bedroom checking me out. (This is one of those times I was grateful to be living in downtown Minneapolis instead of out somewhere out in the country.) One thing I found bizarre was that as soon as the EMS guys showed up, I felt great — relatively back to normal. I didn’t have any pain in my jaw, ears, back, chest, I could breathe…I was thinking the EMS crew was going to think I had been pranking them. After a few minutes of checking me out, they said, “Let’s go!” and motioned for me to come with them. I got up, threw on my jacket and walked out to the ambulance with them.

Inside the ambulance they continued to gather information about me and did some other checks (I don’t really remember what they did) The last thing I remember them asking me was which hospital I wanted to go to and I responded “The University Hospital” I don’t remember anything after this point, but apparently I was conscious and coherent when I arrived at the hospital because I was able to complete the required paperwork, spoke with the nurses and doctors and even talked to my parents on the phone a few times (hopefully I didn’t tell any good secrets lol)

They ran some tests on me (probably CT Scan) and determined that I had a dissected aorta “from the top down” and would need emergency heart surgery if I expected to stay alive. I can’t imagine the shock that I must have felt when they told me this! First of all, I never would have guessed that the symptoms I had felt would have had anything to do with my heart and secondly, I have never had any heart related problems before (aside from being told I had a heart murmur when I was 12 — but the doctors determined it was fine and shouldn’t prevent me from doing anything I normally would) Part of the reason I probably don’t remember any of this is due to the shock of being told it — surgery has always been something that sounded really scary to me and I never wanted to experience it!

I had a wonderful, concerned surgeon, Dr. Ken Liao — I’m so thankful to him and his team of doctors that worked on me. They discovered quite a few problems once they opened me up — My aortic valve was replaced, some arteries going up into my neck from the heart needed to be repaired and I also had a Dacron graft added to repair some problems in the heart. I was in surgery for 13 hours and required 120 units of blood. At one point during the surgery they needed to shut off the blood from my brain temporarily, but they thankfully managed to do this in short enough intervals that I didn’t experience any negative side effects from it.

My poor parents — after they found out I would be undergoing surgery, they left around 1:30am to drive to Minneapolis. Of course by the time they arrived at 6:30am, I was already in surgery and so they would have to wait the entire day in the waiting room until they were able to see me. I’m sure that must have been stressful :After the surgery I was moved to intensive care for a few days — I think the drugs used on me during the surgery were messing with my mind because it took me a couple days before I started coming around to normal.

I knew that I was at the hospital — I remembered calling 9-11, but I didn’t know why I was at the hospital. The entire adventure of being told about needing heart su
rgery, undergoing surgery, etc. was completely erased from my mind (as it still is). I didn’t want to be at the hospital and just wanted to go home. (I guess I didn’t notice all the tubes and monitors hooked up to me lol) Anyways after a few days, I was moved to the normal part of the hospital.

By this time I could carry on a conversation with my parents coherently and was “back in the real world”. I’ll always remember when they first told me that I was in the hospital because I had had a heart surgery. I didn’t believe them! Why would I have a heart surgery? My heart is fine! Then they come bringing in this little stuffed pillow that the doctor gave them with drawings on it to indicate the work that had been done.

That’s when it finally hit me — they were serious. A feeling of gratitude and just plain happiness overtook me — I was so thankful to have another chance at life and realized how close I had come to not being so fortunate. It’s amazing how easy it is to take things for granted.

Most of the time I just spent talking to family and friends and watching TV. After having the surgery, I had some impairments — I couldn’t walk, couldn’t move my arms, couldn’t move my fingers and my vocal cords

were paralyzed so I was a whispering machine lol. The doctors determined that my inability to move my arms/hands/fingers was probably a result of being restrained during the 13 hour surgery — they figured it was just temporary. Likewise, the ventilator had probably caused my vocal cord paralysis – again probably temporary.

The hospital staff began working with me after a few days — walking with them (more like me holding on to them one on each side and trying to walk) to regain this ability. I was very shocked at how quickly I forgot how to walk — I mean I was literally wondering how long it was going to take me before I felt comfortable doing it again. My surgeon was very caring and frequently checked on my status. He had other doctors come and check on my arms and hands to help assist me in recovery.

After a couple weeks I was moved to a rehabilitation hospital — it focused mostly on occupational (doing things you would do in a job setting) therapy, physical therapy (building up endurance, muscles, etc) and speech therapy (basically testing to make sure you are cognitively all there) Each day I would spent about 3 hours cumulatively working with these therapists — everyone was nice and it really didn’t seem like a hospital so that was nice.

By the time I left this rehab hospital about 2 weeks later, I was able to move my fingers (to type on a computer), my wrists and arms were working much better and I could hobble down the hallway on my own : I spent the summer with my parents — I continued in various therapy and cardiac rehab programs and they helped me get virtually back to normal. Now I can move my arms pretty much as well as I could before, my fingers work just fine. I still have some numbness in my hands and feet and am told this can last for a very long time — but overall I’m grateful for how things have turned out.

I take 3 medicines — 7.5mg of coumadin daily (to keep my blood from clotting on the artificial valve), 50 mg of Metoprolol twice daily (blood pressure reducer) and an aspirin. The use of coumadin requires that I have my blood checked periodically to ensure that it is not too thick or thin. You would think that taking a constant dosage of coumadin would keep a constant blood consistency, but there are foods that have an anti-effect on coumadin (foods containing Vitamin K).  What kid wouldn’t die for his doctor to tell him to avoid eating broccoli 😉 No, actually I can eat pretty much anything I want as long as I eat it consistently (so that I take the right dosage of coumadin to offset the Vitamin K)

So now I’m back in Minneapolis, continuing my last year of school. I feel pretty much back to normal, but still have to get the blood checked and see my cardiologist periodically. I’d like to thank everyone who has shared their stories about their aortic dissection – its nice to know that there are others who have gone through this before.

If you need to get a surgery for your aortic dissection, all I can say is you don’t need to worry about feeling any pain. To this day, I have not felt any pain as a result of the surgery — the only pain I felt was the night when I was having all those crazy symptoms. Also, I highly recommend the University of Minnesota – Fairview as a hospital if you need surgery. It is very renowned throughout America for its heart surgery abilities.

Overall this experience has left me with gratitude to God for allowing me to live and for all the doctors and nurses that were able to help save my life. Life is beautiful.

Mike

Chris Jones-26

Personal Stories: Chris Jones

This story really begins back in February with our son Baxter. Baxters left foot has a slight curve which has been there since birth and has gotten worse over time. Doctors in Dothan, AL and Nashville, TN told us that it was due to his position in the womb. He wore a cast for 6 weeks and then the doctors told us that his foot would correct itself once he started walking, but it has only gotten worse. In February he started complaining of his leg hurting and we kind of dismissed it at first, thinking that it was because of the way he was sitting on it when he would be in the floor playing.

We finally made him an appointment with his PCP. We saw Dr. Frisbie in March and she suggested that we take him to see an Orthopedist because she did not feel that his foot would get better and she could see where his foot being curved could cause his leg to hurt when he walks. My wife, Jenifer, suggested Dr. Richard McCarthy in Little Rock, AR because she has Congenital Scoliosis and he ha d cared for her since 1984 and he performed a Spinal Fusion on her back in July of 1993, and she would feel very comfortable in having him care for our son. So an appointment was made and we took Baxter to see Dr. McCarthy on May 1st. Dr. McCarthy immediately mentioned Marfans Syndrome and recommended genetic testing for Baxter. June 1, 2006 We went to see the geneticist, Dr. Mary Curtis, in Little Rock, AR and Baxter was tested for Marfans and received positive results on June 19, 2006.

Typically, it takes three months after the test to get results. The geneticist was pretty sure after seeing me that I had it as well and no test was needed unless I wanted it. The geneticist then recommended that echocardiograms be performed on me, Baxter, and our eighteen month old daughter, Garyn. In order to schedule the echocardiograms at Childrens Hospital in Little Rock, we would need Primary Care Physician (PCP) referrals. Baxter and Garyn were already set up with PCP referrals, bu t I was not. So, we made an appointment for July 21, 2006, at 4:30pm (the earliest available). Before my appointment we found out we had no insurance. We applied for new insurance but it would be a month or so before we found out if we were accepted.

I considered canceling the appointment but something told me to keep that appointment with Dr. Frisbie on the 21st of July, and she agreed to see me regardless of our lack of insurance. On my appointment everything was going fine until she listened to my heart and immediately stated that I needed to see a Cardiologist due to a loud heart murmur that radiated up into my neck. Also upon physical examination she said it felt as though my aorta was enlarged. On Sunday, July 23rd, I had made prior arrangements, with our associate pastor, for my family to be anointed during the Sunday morning church service. Tuesday, July 25th, Jenifer called the company we had applied for insurance with and they said that it would still be a couple more weeks before they would know anything, but to save receipts for medical and prescription bills and once accepted we could send in a claim form.


The following Thursday, July 27th, I had an EKG, echocardiogram, and an abdominal ultrasound. Immediately I was supposed to see a Cardiologist, Dr. Hernandez. As soon as the Ultrasound Tech placed the echocardiogram instrument on my chest she said, Wow without even realizing it. Letting me know that something was wrong. Not to comforting. While we were waiting to see the doctor, his nurse came out and said that before the doctor would see me, he insisted that I have a CT angiogram also. Then, Dr. Hernandez saw me. His reaction was alarming, and he seemed hesitant to show me the results. He said that I had a Thoracic Aortic Aneurysm that measured approximately 7.4 cm, and something had to be done.

He recommended a Methodist Hospital in TX or UAMS, because we did not have insurance he didnt believe that the Methodist Hospital would accept us. Upon my questioning him about what we needed to do and where we needed to go he said that he could write out the diagnosis and we could take it to any ER at any hospital and they would not turn us away. Before he did that he wanted to check with another Cardiovascular Surgeon, Dr. McCoy, to see if he could possibly perform the surgery. Dr. McCoy said that if the aneurysm did not go down into the aortic root that he could do the surgery, and would regardless of insurance coverage. Dr. Hernandez and Dr. McCoy both agreed that something had to be done, not today, not tomorrow, but within the next two weeks, they said.

An appointment was made with Dr. McCoy for August 2, 2006. We went home and called our pastors, Brother James and Danny Spears. They came and prayed with us and Danny shared that we did not need to worry about anythingbills included. Which unloaded a huge burden since I am our only income and the company I work for does not have any short t erm disability insurance or anything. We just didnt want to lose our house. Bro. Danny told us, the least of your worries should be nothing. The church will take care of things. On Thursday night, July 27th, it was mentioned by several people in Dothan, AL to contact Dr. Leland Eaton and see what he would recommend. Thursday night we called my cousin, Marcy to see if she could get in touch with Emily Eaton Stein, Dr. Eatons daughter, and have her contact her dad, to see what he thought we needed to do.

My mom and dad and my brother arrived at our house in Arkansas around 5am. Emily Eaton Stein called Marcy Friday morning at 7:45am and Marcy explained to her what was going on with me. She immediately offered to call her dad and see if he knew anybody that could perform the surgery. Meanwhile, Jenifer and I were about to arrive at Sparks Hospital in Fort Smith, AR to get the results of the CT angiogram that would determine if Dr. McCoy would be able to perform the surgery . Marcy called just before we arrived at the hospital and said that Dr. Eaton would like to get me to UAB in Birmingham, AL as soon as possible. She gave me Dr. Eatons number and had given him ours as well.

I called Dr. Eaton, and briefed him on what was going on. Dr. Eaton expressed the importance of getting me to Birmingham as soon as possible and told me to get all of my records and he would orchestrate and execute the rest. Immediately after talking with Dr. Eaton, I had an incredible peace about the entire situation. After talking with Dr. Eaton, we continued to the hospital where we were informed that the aneurysm did go down into the aortic root, so Dr. McCoy would not have been able to perform the operation anyway. At this point, we collected all of my test results to take with us to UAB in Birmingham, AL. Saturday morning we packed up and went to Alabama.

We stopped in Russellville, AL to stay with Marcy and Doug before going on into Birmingham. We got into Birmingham Sunday afternoon. Dr. Eaton called and said that I needed to be at his office Monday at 10:30 am. Monday, July 31st, we arrived at Dr. Eatons office around 10 am and shortly thereafter, were called back. Once we saw Dr. Eaton he listened to my heart and reviewed the records we brought and then instructed me, with concern and fear as a father would instruct his son, to not do anything! Do not walk, do not so much as lift your little finger. You will be picked up in a wheelchair and taken anywhere you go.

We left Dr. Eatons office and went straight to UAB Hospital where I was admitted. That afternoon Jenifer spoke with her parents back in Arkansas. They were taking care of our stuff and picking up our mail for us. They told us that we had received a packet where we had applied for new insurance and we were accepted and that coverage was effective as of July 22nd and that the 14 day waiting period had been deleted. Wow! What a blessing! Jenifer spoke with someone a t the hospital regarding the insurance and they said they would file it. Later that evening Dr. Rodriguez and Dr. Kirklin came in and said that this was not an emergency because there was no dissection but something needed to be done soon. Tuesday, August 1st, Dr. Eatons daughter, Ellen, came in. She said that her dad had paged her and told her to meet him there. Shortly after Ellen arrived, Dr. Eaton came in.

He asked if it would be alright if Ellen listened to my heart (she is graduating Med School in May, I believe). Dr. Eaton then gave me a note with several different scriptures that he had typed out. He then said since I am still an ordained Elder in the Presbyterian Church, I think we should pray. At that point everyone in the room held hands and Dr. Eaton led us in prayer. During the prayer you could tell that the room was overwhelmingly filled with the Holy Spirit. I grew up with Ellen and it was awesome to see Dr. Eaton in the role of father, doctor and elder.

This was a very special time for me. Wednesday, August 2nd, was a pretty quiet day. I had a 3D Echo. We were told this was to get exact measurements needed for the procedure. The nurse came in and shaved me from my chest to my ankles. Thursday, August 3rd, Surgery Day. We had been told that the surgery would be at 1:00 and they would probably get me about 12 or 12:30. The nurse that morning told me they would probably get me early. Our former pastor from First Freewill Baptist Dothan was on his way and we didnt know if he would make it in before they came to get me. He arrived just after 11:30, he led us in prayer and they came to get me at 11:45. Once they rolled me down for surgery, they had me outside of the operating room. The Anesthesiologist came up and stated that he was going to begin wrapping my head and preparing me for surgery. At that point a woman in purple came up beside me. She had on a hair cap and a breathing mask.

She asked me if I was Christopher Jone s and I said, yes. She then asked if I knew Lewis and Alicia Humphreys and I said that I did. She unzipped a little pocket on her suit and pulled out a piece of paper and unfolded it and said she had an email she wanted to read me. She read me the email and said, people all over the US are praying for you and God will be with us through this . As soon as she finished they immediately rolled me into the operating room. I am told I was out of surgery at about 8:45 pm. I was in CICU until early Saturday afternoon when I was moved to a room. I do remember Dr. Eaton coming into CICU on Friday and how encouraging he was to me. Above everything else that happened through out this experience, I will remember that moment the most. Just knowing that God had lead both of us to one another and the outcome seemed to be so overwhelming for the both of us. I will cherish it forever. Sunday, August 6th, I was told that I would be able to go home on Monday pending a clear echo. Monday,

August 7th, I had an echo and when we got the results they told me that I had some fluid around my heart and in my lungs and they were going to keep me in the hospital a few more days to try and get the fluid off. We were very disappointed at first but knew that God must have a reason for keeping me there. They did another echo on Wednesday, August 9th and the fluid in my lungs was gone and that around the heart wasnt so bad. They were also checking to make sure my heart was getting stronger.

Dr.s Kirklin and Rodriguez came around Wednesday night and told me that we would be able to leave the hospital Thursday morning, but we could not return home to Arkansas. Dr. Kirklin wanted to see me in the clinic again on Monday and a 9 hour trip home and back then back home again would be too much too soon. So we went to my mom and dads in Dothan. Sunday, August 13th we made plans to go to church. Since we were affiliated with First Presbyterian and First Freewill Baptist, we mad e plans to go to both churches. First Pres Sunday morning and First FWB Sunday night. Sunday morning when we were on our way to church Pastor Charley called to check on us and Jenifer told him that we were in Dothan and would be at church in the next 10 minutes.

While at church we found out that another couple there, The Keytons had taken their infant daughter to UAB for heart surgery on Monday. That night at First FWB I had the opportunity to get up and give a briefing of my testimony. I say a briefing because I wasnt really prepared to do it, but I didnt want to pass up the opportunity to allow others to see how God moved in this situation. Both services were very special to me. I just want to make sure that God gets all the honor, glory and praise for this. Monday, August 14th we left my mom and dads around 8:00 am going to Birmingham. Its about a 3 hour trip and my appointment was not until 2:30, but we decided we wanted to get there early in order to visit wit

h The Keytons. We wanted to let them know that God is still on the throne and he can do anything and that Hannah was going to be fine, not that they had any doubt. We knew that the surgery was supposed to start around noon. I believe we got there around 11:30 and as we got into the waiting room, The Keytons were just coming in from delivering Hannah to the nurses who would prepare her for surgery. It was such a blessing for us to get to visit with them and be there to help take their minds off of things for the first couple of hours of Hannahs surgery. We feel now that is the reason that God didnt allow us to go home on Monday, and that is why when we were released we went to Dothan and would have to back in the clinic on Monday. That afternoon at my appointment I had a chest x-ray and an echo and then saw the doctor and found out that the amount of fluid had increased and they were going to put me back in the hospital on Tuesday. Tuesday, August 15th I was back in th

e hospital and on medication to help get the fluid off. I had another echo on Thursday, August 17th. Because the echo was so late in the day Thursday, we didnt get the results until late Friday evening. The fluid had gone down and they let me go again, but not home yet. I had to be checked again on Monday. So we left Saturday, August 19th and went to Russellville, AL to my cousins house. Monday, August 21st we went back to Birmingham and had another echo and were finally released to go home. Praise the Lord! This whole experience is almost impossible to describe well enough for anyone to understand the impact that it all had on me and my family. There is no doubt in my mind, especially knowing our story and what we know of Dr. Eatons story that, A mans heart plans his way, but the Lord directs his footsteps. Proverbs 16:9

Christopher Lamar Jones

The following is the Cardiologist’s story-Just so you can see how God brought us together in this situation.

Christopher Jones is now 26 years old, married and the father of 2 children. When he was 16 years old his older sister had a cardiac arrest and did not survive. She was in her third trimester of pregnancy and made it to the Emergency Department of a local hospital in Dothan, Alabama. An obstetrician was providentially in the ER when the ambulance brought her in under full resuscitation and although she did not survive, the baby was saved by an emergency C-section and is 10 years old today. The cause of the mothers death was determined to be a ruptured aortic aneurysm due to an inherited condition known as Marfans syndrome. Marfans is a condition that affects the connective tissue of the arteries, joints, and other organs. It is notorious for causing asymptomatic expansion of the aorta leading to aneurysms that can spontaneously rupture with little or no warning and this is what had occurred. Christopher and his brother were advised they should have screening echocardiogram s of their aorta to determine if they had the same condition as the sister. The doctor that made this recommendation apparently was not aware that the changes affecting the aorta usually are not apparent until late adolescence or early adulthood. Christopher was only 16 years old at the time and because his echocardiogram was normal he was told he didnt have Marfan syndrome. There was no recommendation made for annual or even periodic follow-up echocardiograms as he got older.

I vaguely remember Christopher from the church I attended in Dothan, Alabama. He was the age of my daughters and they all went to Sunday School together. He grew up, married, moved to Arkansas and I lost track of him until recently.

In the winter of 2006, my son was employed by the Department of Economics at Washington and Lee University in Lexington, Virginia. He spent 6 months of his senior year studying abroad in Brazil and upon his graduation, he was offered a job to stay on at the University and direct the foreign exchange program he had participated in as an undergraduate. He was very excited when he called last winter to tell me he would be going back to Brazil in the summer and he wanted me to come down for 2 weeks at the end of his stay to sightsee and fish for Peacock Bass in the headwaters of the Amazon. Laurence has facility in Portuguese and one of his Brazilian students and his roommate in Lexington would accompany us. Eagerly I made plans for the trip. In May, I reserved a seat from Miami to Sao Paulo on Varig Airlines, I applied for a tourist Visa, and went through the process of innocualtionstyphoid, yellow fever, hepatitis A and B, and even 3 rabies vaccinations. I had my passport, a ntimalaria medication, my camera and flyrod. I had even purchased a CD with beginning Portuguese instructions.

Laurence left the US on June 29 and got to Sao Paulo but his flight to Rio de Janeiro was cancelled and he got to Rio the next day. He told me there was some problem with the airline and its creditors. Searching the internet I found that Varig airline had been placed under restructure protection in the courts in Brazil and was trying to get back on its feet. I contacted a travel agent about one month before my anticipated date of departure for Brazil and found that just about everything but the most expensive tickets on first class were booked on United and American. Also we planned to use Varig for our internal travels once we got to Brazil.

Anxiously I awaited a decision on July 19 as to whether the Brazilian bankruptcy court judge would allow a Brazilian airfreight company to take over Varig with an infusion of $475 million to keep it in the air. By now I had concern and apprehension about my trip. If I got there would I be stuck for days/ weeks getting back. The judge allowed the takeover on July 19 but for some reason my apprehension only increased. I monitored my flight itinerary daily on the internet and begin the think about packing my bags. Still I was waking up at 4 and 5 AM every morning feeling very apprehensive. I did not fear for my own safety or welfare but had a tremendous apprehension about the trip that would not go away.

About July 21 I noted on my itinerary in the internet that one of my connecting flights, Sao Paulo to Rio, was cancelled. I called the airline and they graciously scheduled me on another flight. I was told to call about 3 days before departure for final confirmation. On July 26 I checked the internet and found that they had cancelled the replacement flight. They were not notifying me but I was finding this out myself by monitoring the schedules. I went home that evening prepared to spend 30 minutes on hold on the telephone getting another flight. The man I spoke to was Albert. He pulled up my reservation and then advised me Sir, your flight from Miami to Sao Paulo has been cancelled, we will refund your money. He did not offer to reschedule, just refund. Turns out the company had never even submitted the charge to my credit card when I made my reservation in May. Now I realized that all my apprehension and anxiety was not just imagined. I was not going to Brazil, at least this year. I called my son that night and he was very disappointed. I felt like I had really let him down.

The next day I met a friend, an older gentleman, for lunch. I told him the whole story and said the entire family was a bit down about it. When our meal came he returned the blessing and I remember his prayers that God would intercede and the disappointment of my son and my wife, on my sons behalf, would resolve. Strange that I dont remember him saying anything about thank you for the food we are about to receive but knowing him I am sure he covered that as well.

Now back to Christopher Jones, a young married father in Arkansas. On the day after my friend and I met for lunch, Christopher learned he had the same condition that killed his sister. An orthopedist had told him that his young son might have Marfans and that Christopher had the typical appearance and that he needed to get checked. Christopher had applied for health insurance but was still awaiting notification and at his wifes insistence he went to have an echocardiogram. This showed he had a very large aortic aneurysm, a leaking aortic valve and he needed urgent surgery.

The following morning I was in my office seeing patients and my oldest daughter called me. She was a friend of Christophers cousin who had just called my daughter knowing I was a cardiologist. My daughter Emily asked Dad, what does Chris need to do, this sounds bad. I told her to have Christopher call me and he was on the phone within 5 minutes. From his brief description I knew he needed to get to a major medical center with very experienced heart surgeons because the operation he needed was no blue plate special as heart operations go. I told him to get to Birmingham and I would see him in the office as soon as possible and to bring all his records and x-rays with him. That was on Friday, July 28. I spoke with him by cell phone several times over the weekend and he arrived in Birmingham Sunday so I would see him the following morning. I had plenty of empty room in the clinic to see him Monday because I had originally planned only to work a few hours that Monday A M because I would have been leaving very early the next morning for Miami to catch a flight to Brazil. Now I had all the time in the world to take care of this problem.

When I arrived at the clinic Monday AM a copy of Christophers echocardiogram was waiting for me, it had been overnighted from Arkansas.

My partner and I actually reviewed it before I saw Christopher and it was the biggest aneurysm of the proximal aorta either of us had ever seen. After I examined and talked with Christopher I had my staff place him in a wheelchair with instructions to go straight to University Hospital and do nothing more than lift a finger. I was on the phone to the office of Dr. Jim Kirklin, the Chief of Cardiothoracic Surgery at UAB. He was tied up with an administrative site visit and I could not even reach him by cell phone. The other cardiac surgeon I would have called had left the Friday before and was out of the country. I told Dr. Kirklins secretary that I had a serious problem with a 26 year old who had a massive aortic aneurysm, vague chest pain, and needed to be in the hospital for surgery at the earliest opportunity.

And, by the way I added, he has no health insurance. Her response was something like Oh well, they never have insurance, do they? with a bit of a giggle in her voice. I will reserve him a bed on Dr. Kirklins service, Dr. Eaton. Will he be coming through the admitting office or the emergency room?

Christophers surgery was performed 3 days later with no complications. Dr. Kirklin told the family the aneurysm was huge meaning ready to rupture at any time. The day after he was admitted I went to see Christopher and his family in the hospital. As he lay in his hospital bed I saw a certain peace in his countenance and as I shook his hand he gave me a smile that was worth more the ten trips to Brazil. I returned to see him the following morning on the day of his surgery to be done later that afternoon. I told him he was going to have big time surgery but he was at one of the best places to have it. His wife said Dr. Eaton, he has been at peace ever since he first talked to you last Friday.

Now by this time I feel a little shaky, butterflies in the stomach, and know I have had a very close encounter with the Holy Spirit. Not to say this might not have worked out without me, but its hard to get an immediate referral this fast when you have no health insurance unless you have an advocate within the system. Thats just what I wasadvocate within the system. And this was all orchestrated by God through the Holy Spirit beginning even months before it happened. How many times does an airline make you a reservation and fail to charge your credit card. God knew I wasnt going to use that ticket.

I saw Christopher in the ICU yesterday and he is doing well. I also saw his family and for another unknown reason this week I just stumbled across Psalm 139:16-17. I copied the verses off the computer and gave them to his wife to give to him the day he leaves the hospital. I told her to be sure he never thinks that either Dr. Kirklin or I saved Chriss life, we were just placed in a certain place at a certain time to be available according to Gods good will. The day before Chriss surgery I had hurriedly copied off the computer some scriptural verses for him to have in the hospital. Some had been shared with me years ago by Pastor Baxter in Dothan, Psalms he liked for hospital visitation. I took the liberty to add Jeremiah 29: 11 at the end of the Psalms to assure Chris he had a hope and a future.

When I first was exposed to the 6th Chapter of Isaiah, I recall the feeling that being that close to the presence of God must be very awesome, frightening, almost terrifying experience. More recently I recall how in holy fear Noah labored on the building of the ark. Holy fear is how I can express the apprehension and anxiety I experience the entire month of July, 2006 being very uncertain of my plans to travel to Brazil. I am still not over this and it has been a life-changing experience. I always thought a person had a sense of peace and tranquility when they were within the will of God. This worked the other way around.

And about BrazilI know I will get there soon at a time of Gods choice. Otherwise, why would the Holy Spirit have allowed me to have to get all those painful vaccinations? And there is also the issue of who will pay for

Christophers hospitalization. The day before his surgery his wife was notified that the application for insurance they filed weeks ago had been accepted and likely would go into effect as of the date of the original application. This is unreal and very, very humbling.

Contact Christopher

Stephanie Gonzales-21

Personal Stories: Stephanie Gonzales

My name is Stephanie and I was 21 years old at the time of my dissection. It was mind blowing I still can’t believe it happened. It happened so quick I didn’t have time to think about it. I was with my future husband at a Christmas party at his family’s house on Christmas Eve.

I stood up to walk inside and I felt a sharp stabbing pain in my back between my shoulder blades. I stood still for a while hopping it would go away but it got worse the pain shot from my back to my chest and up to my jaw. I tightened up and called for my boyfriend. He came running and helped me in to the house. At first I thought it was a back spasm because I had one before but the pain was different. I waited for about an hour and I couldn’t take the pain anymore so we went to the hospital. When we got there the ER was packed!!

I went threw triage and they drew blood from me and did an EKG. They didn’t find anything on the EKG so they put me back in the waiting room until they could do an x-ray. It was actually the x-ray tech that discovered it because she took the x-ray told me to wait there in the x-ray room and she went outside to talk to one of the nurses. The nurse went to the doctors and then I was swarmed with nurses and doctors asking me all kinds of questions and sent me for a CAT scan.


I kept asking what was going on but no one would tell me they kept saying wait for the doctor. My head was spinning I was scared, mad, confused, and frustrated all at the same time. Then finally the doctor told me I would have to have open heart surgery I freaked I told them no that I didn’t want to and then they told me I could die and I still said no. I know now I was in such denial!! My boyfriend was scared but he was trying to be strong for me I could tell in his face he couldn’t wrap his mind around it either. I told him to call my mom and tell her I’m at the ER but not tell her for what until she got there cause I didn’t want to have a accident on the way.

The doctor said the hospital wasn’t equipped for my condition so they were going to life flight me to anther hospital that was more equipped. Just when they were getting me ready for the flight my mom got there they explained to her what was going on and her face dropped. She gave me a hug and kiss and said they would meet me at the other hospital. At the other hospital I was put in ICU and had a team of cardiologist talk to my family and I about the procedure.

The shoved a camera down my throat to check it out. I went into surgery on Christmas morning and spent 5 1/2 hours on the operating table. I woke up and I was on a vent I told my mom in sign language I wanted it out now!! My mom called the doctor and he said I had to breathe on my own and it was to soon I begged him and he felt sorry for me and told me that he would turn it off for a couple of seconds and it was up to me to breathe to a certain number and if I could then he would take it out. So when he turned it off I used all I had to breathe I did good so he took it out right there and then. I looked like the bride of Frankenstein I had 2 tubes coming out of my neck, 2 out of my chest, IV’s in each arm. I was bad! The nurse took out the ones in my neck the same night and one from the chest a few days later.

Then in one of the x-rays showed I had air pocket in my lung from when the chest tube came out. So I kept the second tube in me longer. I was in the hospital for Christmas and New Years but the way I see it I got the BEST Christmas present I could have asked for MY LIFE!!!

Contact Stephanie

Tiffany Nuanez-26

Personal Stories: Tiffany Nuanez

My name is Ronda Nuanez. My daughter Tiffany Nuanez aorta dissected after giving birth to her son Aston 8/30/03. She has a type B. She was scheduled to have her descending aorta replaced. When the doc. put a probe down into her to monitor the surgery, they found that her ascending aorta, aorta root and aortic valve were all bad.

The valve was leaking severely and the root and aorta was enlarged. They decided to reschedule and replace the all of the above on 2/8/06. On that morning due to the valve leakage, she went into congested heart failure. She was rushed to surgery and I was told that they were going to do everything for her. She made it, though a few days later they had to open her back up and remove blood from around her heart and a pocket of blood that pressing against one of her lungs.


She is recovering and still has lots of pain especially in her back. I was told by her surgeon that was because her type B dissection was 5.5. She will be back in earlier April to replace the descending.

I’m really worried about the complications such as paralysis. Anyone in this page every had their descending aorta replaced? We would really like a feed back. Also, any females out there that have Marfan Syndrome, please DO NOT HAVE ANY CHILDREN, it is very dangerous.

We were told that by her docs. at the time when she was younger that they did not believe that she had Marfan Syndrome and that she could have all the babies in the world, if there is any doubt, please do not have a baby. Thanks for reading and hope someone replies.

Contact Tiffany

Robert J Roberts-28

Personal Stories: Robert J. Roberts

Brian,

On January 29th I experienced intense chest pains at our local church youth group meeting.  My wife and father tried in vain to convince me I needed to go to the ER.  However, I convinced them and myself the pain was gas.  This was on a Sunday night, by Thursday morning February 3rd, I needed little persuasion.  My internal medicine specialist quickly referred me to the local cardiologist who in turn handed me off to a wonderful cardiac surgeon.  My cardiologist determined I had suffered an aortic dissection which had to be fixed via emergency operation.  All these life changing and imperative, life saving steps took place in less than 2&1/2 hours.    My surgery took 8&1/2 hours, but thank God it was a complete success.  It’s been just over five months for me now and I still have my good and bad moments.  The whole ordeal, for me, was more a mental than physical battle.  I often wondered if it was like that for all other heart patients.  Anyway, three months after my surgery I was cleared to return to my job at the Post Office as a Rural Carrier Substitute.  This helped me improve even more, just being able to get back into my routine and seeing for myself that I could still do my job.    I was born with a bicuspid aortic valve, which had nothing to do with my aortic dissection.  However, they fixed my leaky valve while they were in there.  You know, the old two for the price of one sale.  I got a St. Jude mechanical aortic valve, the hottest valve on the market now, really cutting edge technology.  My dissected aorta was replaced with a Dacron sleeve.  My Doctors tell me these new gadgets should prolong my life by another 50-60 years.


  As I already knew prior to my surgery, only the Good Lord knows the day and time of our departure.  So I put no stock in what man tells me, even a trained medical professional, but if I get to 78 or 88 with no more problems that will be great.  God has taught me so much through this little experience, namely our dependence and reliance should be on Him and not self.  When you learn that you’ve learned a lot.   I still wake up at 3 AM regularly, I just write now instead of fretting or worrying.  I still have strange scents that I smell, that no one else picks up or simply isn’t there.  I just say I’ve got Spidy-sents now.  Lots of times my taste buds tell me things that cannot be right, like fruit tasting like a spicy Mexican meal, but this problem has almost disappeared.  And sometimes I think I see someone I think I know in the distance, but upon approaching them I realize it’s not who I thought.  This hardly counts according to my wife because I had that problem before my operation she reminds me.    All that to say this, any type of heart surgery affects all the senses.  It is a proven fact.  My doctors told me everything going in, actually coming out because they were too rushed going in to do much other than get my signature on the bottom line.  I thought these “side-effects” didn’t apply to me, just everybody else.  Heart surgery will change you whether you think it will or not.  If you’re struggling with something, anything, talk to your doctors, they will help you any way they can to get well.  Most importantly talk with The Doctor, He knows all and heals all, perfectly.  His Son Jesus Christ is there to hear you anytime you press the help button and He’s never too busy to come immediately.   Well Brian that’s my short story.  I’m shopping around my long story to be published now.  That’s why I’ve been slow to get back to you.  If you or any visitor of the site have any questions I’ll be at robertjohnroberts@yahoo.com.  I simply request not to be forwarded a bunch of junk as I hate that stuff as much as the next guy.  This address is for serious enquires only as they say in the classifieds…    Look forward to hearing what you think.    john

Cindy Pritchett-27

Personal Stories: Cindy Pritchett

In November 1993, my husband proposed to me. In January, 1994 we were pregnant. In June, 1994 we got married and moved to Maryland. I was 27. I took a job marking the MSPAP tests and finished the last week in August to prepare for my baby-due October 4th. While cleaning I fell and wound up having my beautiful girl on September 2nd (Labor Day). I had been diagnosed with a heart murmur while I was in college and was given extra fluid antibiotics during delivery. My epidural ran out-half way through the labor (24 hours) and I remember screaming and cursing at the nurses about the pain I was in. Little did I know that on top of labor pains I was experiencing my aortic dissection and a total “blowing out” of my aortic valve. My daughter who was 5 weeks premature stayed in the hospital and I was released, but I had to go back to the hospital every 2 hours for feeding. I remember wondering why instead of losing weight after delivery, I seemed to be gaining (later I found out that this was fluid). I was tired, looked awful and had terrible pain in my back. I had to sleep sitting up. I had a hard time breathing and was coughing a lot. My husband called the hospital who told him to make me drink water and if he brought me back-it would not be covered by our insurance. I reached a point where I could not breathe and could not talk from coughing, and he took me back. I remember standing in front of the hospital using all my concentration to get as much air as I could. I was in congestive heart failure-one step away from a ventilator with 64% oxygen. I remember everyone moving out of my way in the emergency room- I must have looked awful and I don’t remember much after that.


I woke up and was told that I was being flown to Johns Hopkins. My baby would be cared for by my mother (oh, and by the way, could you use this breast milk pump before you go?) I refused of course because I had no idea what drugs they had given me. Anyway, when I got to Johns Hopkins I was told that I had to stay there for six weeks for my aorta to stabilize (it was still soft from childbirth) I was on morphine back and forth between floors and tests, MRI’s catheritization, all kinds of x-rays my fairy was there-thank God for the Ronald McDonald house. My husband was going nuts and I was not able to see my new daughter for weeks. They wound up flying her to Hopkins where she stayed in the NIC-U. She wasn’t able to eat, they had to feed her with a tube and she also had an open PDA (common for preemie’s)

My aortic dissection was extreme-ascending and descending and my aortic valve was replaced with a St.Jude’s valve. A surgeon was flown in from Germany because I am so small (4’11, 114 lbs-at the time) that they wanted someone with experience in pediatric cardiac surgery. They could not fix everything at once, so they left the descending aneurysm and created an “elephant trunk” in case they had to complete the surgery later.

I just got back from my cardiologist appointment and I am told that there is a chance that I will need surgery again. It seems that My ascending aorta has gone from 4.1 mm to 5.6 mm. At least that’s what they think per CT scan. I meet with the cardiac surgeon to discuss options and details in two weeks. Please-wish me luck.

Contact Cindy

Jasons Story-20

Personal Stories: Jason’s Story

HI MY NAME IS ERIN AND THIS STORY IS ABOUT MY FIANCE JASON WHICH DOES NOT HAVE A HAPPY ENDING.

FOR A WEEK HE WAS COMPLAINING OF CHEST PAINS AND WE FIGURED HE PULLED A MUSCLE BECAUSE HE WAS ONLY 20 YRS OLD.


WELL ON JUNE 4 I TALKED TO HIM AT 1:OOPM AT 1:20PM HIS SISTER CALLED AND TOLD ME THAT HE STOPPED BREATHING. WELL JASON DIED THAT DAY.

BY THE TIME THE EMS ARRIVED JASON WAS ALREADY DEAD IT HAD KILLED HIM INSTANTLY THERE WAS NOTHING WE COULD DO.

I AM HOPING THAT BY TELLING YOU MY STORY I CAN HELP SOMEBODY ELSE REALIZE THAT IT CAN HAPPEN AT YOUNGER AGES.

Contact Erin

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!)

Keith Hallbourg-25

Personal Stories: Keith Hallbourg

Brian,

Hello. I just happened upon your website via a “Google” search. I too survived an acute dissection in 1994 when I was 25 years old.

Long story short, I am still here with a St. Jude valve and a dacron ascending aorta. In addition to some physical limitations and chronic concerns I am fairing well enough not to complain much.

All things considered I could be dead for 10 years plus at this point.


That said, I continue to suffer mentally from the psychological trauma of the entire life changing event.

This mindset has been exacerbated greatly with my brother’s recent sudden death (April 16th, 2004) of an acute aortic dissection, at age 37.

I would likely enjoy, or at least find cathartic, corresponding with you regarding our similar experiences.

If this is of any interest to you please email me at your convenience. Otherwise, best of luck to you.

Cordially, Keith W. Hallbourg

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!)

Powered by WordPress & Theme by Anders Norén