Category: Thirties

Julie Raines-39

Personal Stories: Julie Raines

Hi everyone, I am a dissection survivor and I hope my story helps everyone that wonders “should I go to the hospital or am I OK”. I have Marfan’s Syndrome, and at the age of 38 I was surprised with an unplanned pregnancy. All of the doctors wanted me to terminate the pregnancy because of the risks, but this wasn’t an option as far as I was concerned. Nine months and every test possible later, I had a beautiful baby boy. Six days after delivering I was sitting on the couch feeding him.

When I went to stand up it felt like someone stuck a knife between my shoulder blades. I had searing pain in my back and shoulders, and I couldn’t breathe. I called for my husband to get the baby and told him to call an ambulance, something was wrong.

The ambulance driver was very nonchalant about my pain (Unfortunately Marfan’s Syndrome isn’t very well known among emergency personnel) and he even suggested that I don’t go to the hospital if it was just a pulled muscle or something in my back. Fortunately there was an emergency room doctor that knew a little about my situation and he immediately ordered a CT scan. The scan showed a aortic dissection had occurred. All of a sudden I went from just another patient to a critical cardiac patient. I was flown by Healthnet to the Cleveland Clinic for treatment.

The doctors at the Cleveland Clinic did MRI and CT and finally diagnosed the dissection as a Type B descending dissection. I was put on mega doses of hypertensive, told to try to reduce my stress level (yeah right, with a new baby at home), and sent home after being scheduled to see a thoracic surgeon in two months for a possible elective surgery at that time.


Six days after returning home I was awaken in the middle of the night with what I can only describe as a funny feeling in my chest. My heartbeat was very prominent in my neck and on the right side of my chest and it “just didn’t feel right”. Back to my hospital, and another Healthnet flight to Cleveland and I was then told that the dissection had formed an aneurysm in the arch and aortic valve, and surgery was performed.

Long story short (too late), never, never, never disregard any pain or “funny feelings” you may experience in your chest or back, especially if you are a Marfan’s patient. If I had stayed home and “let the pain pass”, as I normally would have done with any other pain, I would be dead now, and my children would be motherless. One of the hardest things for me to handle in all of this was waving at my husband, daughter and 6 day old son as they loaded me into the airplane to fly me to Cleveland, knowing what was going on inside of me and what could happen at any time.

Although it was hard to leave them , I knew that I had to get this taken care of and get back to them. The doctors at Cleveland are wonderful, and at no time was I ever scared about what was happening.

Now, I have a question for everyone else. What is the long term prognosis for a Type B dissection? They repaired the Type A dissection but left the Type B. It extends from my left carotid, down through my descending thoracic, and into my right iliac artery. Will this “heal” or will I always run the risk of another aneurysm forming. Why do I still have some pain between my shoulder blades? I can’t seem to get a straight answer from my doctors about this and I need to know.

Thanks for listening.

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Rick Mahes-31

Personal Stories: Rick Mahes

Hello Brian, I will briefly tell you my story:

It was the day after thanks giving 1994 I was 31 years old at that time on that day I had my supper [Indian food] and sat on my couch to watch TV, all of a sudden I felt like a sharp knife going thru my chest I kneeled down to the floor and held my chest  my wife quickly came to me and walked me to the bed room, I told her I have severe chest pain. so she called 911 within few minutes the ambulance came and took me the hospital [one of the worst hospitals in NY St. Claire’s on 52 St.] I was taken to the ER my vital signs were normal EKG was normal at this time I was screaming from pain, now the pain was radiating to my by back. then they took a ray now it was past mid night started to scream  then they gave me a pain killer for the pain the next morning the stupid doctors [DR Joann Harrison, and DR  amir sitafalwalla] told me I had indigestion since the last thing I did was have Indian food. I was told to eat Jell-O and if the pain comes back take Tylenol before being discharge I told them I am still in pain, and they told me it was normal.


I am self employed. so I rested that day and next day went to work  I took Tylenol every 4 hors around 4 PM I couldn’t work so I went home and went to sleep, couldn’t sleep took more Tylenol, next morning my wife suggested  we go to a different hospital. I agreed and we went to Beth Israel  in NY they admit write away  within few hours I was asked to go for a cat scan and from the results the told me I have type b aortic dissection extending up to my abdomen. I was there for few days  for observation  and finally they decided to perform surgery on me  after the surgery I went in to a coma  I woke up after 3 weeks little by little  I came conscious  I was in the ICU for 3 months  what a great surgeon DR Robert Tranbaugh and his nursing team  thanks to them I am alive today !!!  after the hospital I had go for rehab  for a month learn walk  talk eat like a kid, then I came home  every thing was OK until last month August, on my annual mri they found an another aneurysm  below the first dacron graft. on my first surgery I wasn’t  scared  at all but this time I scared  I don’t know what to do .

thank you for reading

Rick

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Evelyne’s Husband-36

Personal Stories: Evelyne’s Husband

Hello Brian and All

My husband story is a combination of bad luck and Good luck started at age of 36 which is too early for any heart problem specially it doesn’t run in the family.  My husband had some palpitation feeling whenever he played golf. He went to a cardiologist specialist in Pasadena checked him up and told him this is a heat stroke and to drink water whenever he gets the same symptoms and he did some test on him including echo cardiogram.

The echo showed that he had a bad leak in the valve but unfortunately the doctors never checked the reports since he knows us very well needless to say he us to be a faraway relative.  The Doctor never checked the echo cardiogram 3 month later my husband was sitting in our living room watching TV when he felt a bad pain in his leg and arm, I was at work at that time.  Called the nearest hospital and they advised him to drive himself there he did.

My husband was admitted in the ER (the hospital was not equipped with the proper staff to check my husband didn’t even know what he had, that was Friday afternoon Sunday Morning my husband was transferred to UCLA in Westwood California where they did and EKG and A TEE test the cardiologist that was in the hospital at that time came out after all the test that needed to be done and that was his exact words


I am sorry we can’t do anything for your husband there is all blood all over in side including of the rupture of the valve, but by law we have to operate on him that was in August 2, 1992 they prepared my husband for the surgery he was wheeled in at 7PM because they flew DR Hillel Laks from somewhere in the United states because the chance of my husband survivorship with him doing the surgery goes from 50% to 90% and because of his age to they had to went for DR Laks.

Needless the say after 3.5 hour the surgery was successful and everything went very well, what we didn’t know at the time that the type of Valve that my husband have is the two flap valve that the aorta comes week because of this type of valve. The surgeon repaired two area the arch and he left his own tissue and another lower section and replaced his valve with saint Jude Valve of course at that time they didn’t know that the tissue in between become week so in 2002 my husband had gone an MRI and they found an aneurysm in the tissue.

That was left from the first surgery they give him 3 to 6 month if he doesn’t do the surgery in January 14 2003 my husband hand undergone his second surgery to repair the aneurysm this time the surgery took 11 hours my husband recovered well and the doctor advise him to drop to the lean weight which is 169 for his height and to walk every day..

The bad luck was, we went to Family friend doctor which is big mistake the 1st hospital that he was admitted didn’t know what is going on with him they only where giving him medication to calm him down because he was screaming from pain (which was the dissection of the aorta) If he doctor had found out from the beginning that his valve was leaking, my husband would have the dissection and he would have only replacement the valve   The Good luck that we had that God was looking over us never left us one minute and he put us in very good hands with the Doctors and the care of UCLA chiefs surgeon Dr. Hillel Laks.  Also Dr. Hillel Laks has a foundation called the Blalock foundation for research we need to push more to have research done to find a cure for the dissection.  If you can donate any funds to his foundation and indicate on the check for research dissection aorta and aneurysm that will be great.    Sorry my story is very long but I thought giving you all the details and also tell everyone that a minor mistake can turn to a night mare   thank you all

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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!)

Rosa Lujan-30

Personal Stories: Rosa Lujan

I also had an aortic dissection, this happened about 5 years ago (I was 30). Ten years prior to all of this I had been diagnosed with Lupus. I had my first child in 1995. After her birth I was in the hospital for about 3 months due to a lupus flare up which caused my kidneys to fail. I was given a chemotherapy drug (citoxin) which saved my life. I was sent home with a bunch of blood pressure medication and prednisone. In May 1998, my second child was born, premature, at 25 weeks.

He only weighed 1lb 6oz. November 1998 we were in Los Angeles, attending my husbands uncle’s funeral. I remember feeling like a sharp back pain, so I decided to go into the bedroom and rest my back, my children were in that room also. As Soon as I sat on the bed I had to get right back up, the most horrible pain I have ever felt ran from the back of my back to the front of my chest. It felt like if some had just stabbed me and cut me open. Nobody knew what to do.


The ambulance came and took me to a near by hospital where they tried to help. So then they took me over to my HMO there they put a camera down my throat to see what was going on and proceeded to tell me that they would have to do open heart surgery. They took me to another hospital, because they couldn’t do it there. The surgeon re-did the test and saw that the tear did not go through all the way. so there would be no surgery. I did stay at the hospital for a about 5 days, so they could keep an eye and stabilize my blood pressure. Since then I have had my share of hospital stays, since I have other complications as well.

Just this week I got a call from my doctor telling me the results of my yearly MRI. He informed me that I might be needing surgery to repair my aorta. Well thank you for having this site available to us, May GOD Bless you.

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!)

Jennifers husband story-33

Personal Stories: Jennifer’s Husband-A sad story

Hi my name is Jennifer my story doesn’t have a happy ending. My husband past away of a dissecting aortic aneurism in December of 2003.He did not know about it. The last two weeks of his live were horrible. He was in and out of the hospital er and they kept telling him he had kidney stone which come to find out weren’t there.

Well a urologist put a stint from his kidney to his bladder and said he did not see stones but left the stint in anyways. The day after my husband became very sick so he went to the er and they told him he had a kidney infection and they were going to keep him and give him fluid and antibiotics. Well that night the nurse called and said they were going to move him because his blood pressure was 205/112 so they were going to move him so they could watch his blood pressure.

Now he has had high blood pressure for 3 years They said they couldn’t control it but they never really tried. Anyway the next day I took our baby to see him and the nurse called me when I got home and told me not to bring her back that he had another infection in bowel called C-diff caused by the antibiotics from the kidney infection.


Earlier that day they had taken the stint out a perpetrated his bowel. well at about 10pm I had went up there to stay with him and they wouldn’t let me in. They told me to go to the waiting room when I got there his parents were talking to the Doctor and cringe and they said his heart had stopped and they were still working on him..15 minutes later they came back and said there was nothing they could do they tried everything.

Well after that I went in there and he looked nine months pregnant and I didn’t understand why! well the day of his funeral the Doctor called and said what he had died from and the reason he looked so big is he ripped from his aorta to his neck down to his groin. it was 3 to 4 feet long.

The doctor said she it was very fare for one so big to someone so young. My husband was 33 and the next thing I knew was I was a 23 year old widow with a 4 month old daughter. Not to mention he had a 8 year old daughter from his first marriage. Still to this day I don’t understand why my husband is dead and why they didn’t do all the right tests to save him….

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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!)

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