Category: Fifties Page 2 of 4

Karen Schubert-50

Name: Karen Schubert
Email: greeneyes3176@yahoo.com
Age at time of Dissection: 50
Type of Dissection: Descending
Date of Aortic Dissection: 10 June 2012
Tell Us Your Story:

Was just a normal day…I was preparing to go shopping with some friends and suddenly I was in the worst pain in my life. The pressure in my chest was unbelievable. I kept thinking it would pass. I fought going to the hospital for several hours. Finally I gave in to my friends begging and went to emergency. It took quite a while before the ER got me in. They performed a CT scan~apparently found nothing and sent me home with a prescription for pain pills and antibiotics for a kidney infection. After the pain medication wore off that I received at the ER I found I had to basically take 4 x’s the amount of pain meds prescribed to get about 15 minutes of relief.

After just a few days I went to Urgent Care and was prescribed more pain meds…went back again 2 days later and finally was sent for a sonagram. Doctor called me within a couple of hours and told me to get to emergency right away. Was checked in. Had 2 different blood pressures on each arm. Was given
anther CT scan (can’t remember what it is called but its the one with the color injection or something to that affect). The ER Doctor explained I had a descending aortic dissection and that it was extremely serious. Gave me some major meds in my IV and apparently I was taken to another Hospital in an ambulance, I do not remember one bit of that, and I woke up the next day in ICU where I spent a week.

They explained they could not do surgery because of where one of the tears is located. It’s at a bend. Now I’m on a ton of meds to keep my blood pressure down and have gone to see the doctor once. I am scheduled to go back next month for another CT. Which I am looking forward to because I am hoping to hear improvement. I was told I have blood that goes into areas (other organs such as my kidney’s) by means of the dissection. I have been told to quit smoking which I haven’t been able t do as of yet. And I get scared when I feel any type of pressure or slight pain near my heart. I would love to hear any feedback and/or info from others.

Helen Rubin-56 (husband’s story)

Name: Helen Rubin
Email: hcrubin@macos.net
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 6 June 1999
Tell Us Your Story: This is my husband’s story. Please let me know if 9 pages is too long – his hospital time + rehab was prolonged and complicated – 70+ days in the hospital alone.

Martin Rubin Dissection and Replacement Aortic Valve 6/6/1999

Our story:

With the approaching 13th anniversary of my husband’s collapse at home and emergency 7-hour surgery in 1999 for an aortic dissection and valve replacement, and his amazing survival, I am sharing our experience. Thank you to everyone who posted their family member’s story here – you make a difference to us all!

Around 11 a.m. on Sunday the 6th June 1999 Martin was in the bathroom shaving when there was a tremendous crash. I ran to the bathroom door and got no response, and then ran to call my oldest son, Daniel. We couldn’t open the bathroom door and there was still no sound from inside. Daniel rammed the door with his body, he could take only two steps in the short hallway – it turned out later that he had pushed the door frame out of the wall; and then a voice from inside said “I’m OK”.

We both knew something was terribly wrong. My mind was racing, was this a heart attack? I knew if I called an ambulance I would further stress Martin (you have to know him to understand what I was thinking!) meanwhile Daniel was very calmly telling his father they were going to the hospital. Martin removed his watch and wedding ring and went to the car with Daniel. I tell everyone that Daniel, at 21, rose to the height of his abilities in those few minutes. I still don’t know why I drove behind them in my car – did I need that extra two minutes to lock up the house? I guess so. I tend to go extremely calm at times of duress; I do not panic easily!

Mercifully our county hospital is within 5 minutes of our house and as soon as Daniel pulled in by the ER door he told the staff “I think my father’s had a heart attack”. Being a Chest Pain Center they were ready to get him a wheelchair and tend to him very promptly. Martin hates the fact that his chart described him as ‘56 year old obese male’. He was well overweight at the time the dissection happened and under extreme stress.

I don’t remember too much of the pre-op hours except for filling in forms, answering questions and waiting. Martin had never been sick before, his primary care doctor’s practice was 30 miles away. He had been an avid weekend cyclist and had also carried our sons as babies and toddlers in a backpack when we went hiking each Saturday morning – he was a very strong man. A cardiologist told us that he thought Martin might have one of three conditions – I now realize one was ‘aortic dissection’ but I don’t recall the others. He then got on the phone to find a cardiovascular surgeon. He later said to me “Try to find a cardiovascular surgeon on a Sunday afternoon”! Martin was sent to the cardiac cath lab for further testing and by then it was determined that there was no more time for tests. Emergency surgery was the only choice.

I told Daniel to track down his younger brother Alexander – this is all before we all had cell phones. – Alexander at 18 only had a beeper and was 20 miles away; I didn’t want him to drive like a mad man. Daniel apparently didn’t quite express the severity of his Dad’s situation because Alexander made a stop to check in at our Boy Scout hut just before he came to the hospital! But fortunately Alexander arrived just before his father went into surgery and was able to see him, although Martin didn’t recognize any of us at that point. We really didn’t expect him to survive and we now know that the survival rate for a dissection, even with prompt emergency surgery, is slim – as with John Ritter and Lucille Ball.

So we sat together in a cold waiting room for the next 7 hours. Daniel’s girlfriend came and brought a blanket and some playing cards and a friend came to see us. I’d simply called to wish her daughter a happy birthday and say that I wouldn’t be over to see her because we were in the hospital with Martin. But she tracked us down in the hospital telling her husband “I must find Helen”.

Around 10 p.m. that Sunday evening Dr. S., the cardiologist, who had watched the surgery, came to see us in scrubs and told us to go up to the CVICU floor waiting room (CVICU became for us the affectionate name for the Cardio Vascular Intensive Care Unit and all its staff – a true team in the best sense of the word). Shortly after we arrived the surgeon, Dr. R., came to speak to us saying, I suppose, that the surgery had gone OK, we could go and see Martin and that a nurse would be at his bedside for the next 24 hours, and then said the words I most remember “I’m going to get horizontal in my office next door, but I will be on call”.

We visited Martin finding him prostrate in bed with tubes everywhere, machines attached, but of course could do nothing. The nurse reassured us that he would be with Martin all night so there was nothing to do but go home and come back in the morning.

The next day Alexander came with me in the morning and Daniel stayed at home. A few days later Daniel announced that he thought he was going to have a nervous breakdown at which point I had to choose, him or his father. I put his girlfriend in charge of him and called two old friends who I knew would help and support him if he needed more. They came the next day to the waiting room. I am forever grateful to them and Daniel’s now ex-girlfriend, they are all good family friends.

The next 50 days were exceedingly complex to say the least. After two weeks we received a hospital bill for $1.3 million! At which point Alexander said “I guess we can’t worry about money, so we’ll just worry about Dad” – a very wise 18 year old, he hasn’t changed.

Martin was shortly put in an induced coma to keep his body calm and allow him to heal – he had come out of the initial anesthetic and burst open the staples of his chest incision! As I said, he was strong and I’m sure then very alone, scared and disoriented, never having been in hospital. Alexander and I stayed at Martin’s bedside from 9 a.m. to 9 p.m. every day except when another patient was ‘coding’ when we promptly left to let all staff do their best, when a new patient came up from surgery, for lunch in the hospital cafeteria (we were there for so long I asked for the employee discount!), or at evening shift changes when we went to get supper.

After a while we were allowed to remain in Martin’s room even when there was another crisis, the staff just pulled the curtains and we sat quietly with a book or journal.

There followed multiple relatively minor surgeries although I’m sure in his case they were quite serious, including a cardiac tamponade plus what seemed like constant changing of central lines (I now know they are a major source of infection if not changed frequently). They even used the paddles on him at one point. And eventually performed a tracheostomy to allow him to start breathing by himself. Through all this we never allowed staff to shave off his handlebar moustache and even put a sign above his bed!

Martin was on kidney dialysis for many of those days. The rest of the aspects of what happened are in my journal. He did suffer at least two medical errors by nurses. The most debilitating mistake was with Lovenox, a drug used to keep his blood thin. It is a drug which must only be injected into the stomach – a young nurse (just back from maternity leave) took pity on his black and blue stomach and put an injection of Lovenox into his upper arm. That shot caused a hematoma (a large swollen ‘bruise’) that had to be lanced, but not before he had permanent damage to the nerves in his right arm and lost the use of his right hand.

When medications were reduced to let him come out of his coma he was very confused he even spoke in Spanish to one of the nurses, who responded in kind. (Martin just has the basics of Spanish, he is by no means fluent so that was a strange response from him). Later he yelled at Alexander saying “I’m a 65 year old man why don’t you go back to New York”. This from a 56 year old to the 18 year old son who had been by his side for 49 of the 50 days he was in the coma! Alexander firmly said “If you continue to talk to me that way I won’t visit you again”. And then little by little we discussed ordinary and sensible subjects. We had to ‘force’ Daniel to visit his father before and after he came out of the coma. On occasion when I look in my journal from that time and find the one photo we took of Martin once he was awake it is very scary to see, so I truly understood Daniel’s reluctance to visit. But since that time Daniel and Martin have shared many great moments together; they are as close as ever.

One male nurse was from New York where Martin had lived until he was 18, they talked about the music from their youth – Martin suddenly remembered where his high school year book was and his old 45 records! They were just where he said they were and Alexander put the records on tape and we played them in his CVICU room and looked through the year book. Good memories coming back. He also remembered where his Army discharge papers were which I’d needed for applying for SS disability – all I could say to the social security official was “He saves everything, I know his papers are in a safe place”. The more ‘normal’ he became the more we could find things to jog his memory: a favorite comedy on TV then the Tour de France – each gave us topics of conversation. “Do you remember…?” and the ability to check his memory. Many weeks before I had plainly asked Dr. S. “What are we going to get out of all this?” He knew what I meant but as ever he found the 1% of hope to give us and that’s how he responded once again. We’ve never lost hope with Dr. S. around us.

Once Martin was off dialysis, out of the coma and breathing without a machine he went to a step down unit but he was still unaware of how bedbound he was and what he had been through. His left leg had also atrophied as a result of the complexity of his case. How were we supposed to explain it all to him?

Approaching the 65-day mark in the hospital the insurance comapny representative was very anxious to get Martin out and into a rehab center. She was the most awful person we had contact with during this whole experience. Martin’s secondary surgeon, Dr. H., asked him how much longer he wanted to stay in hospital and I’m sure he put his career on the line by ensuring that Martin could stay for another week – we were so grateful.

Martin was sent to a nursing/rehab home which was awful – we had the choice of two on our insurance, neither of which was as close to our home as the hospital. The only saving grace was that Dr. H’s physician’s assistant, Ed, who was a contemporary of Martin’s gave him his card and told him to call any time he needed to talk – Ed was special. The second day in the nursing home we discovered that two rehab therapists didn’t know how to lift a 200 lb bedbound man! Plus he still had the stub of the tracheostomy – who would keep that clean? Would he even get his meds on time? And what would that atmosphere do to his mental state? What about his bedsores, getting a bedpan? The list of questions was endless.

After driving home sobbing two August evenings in a row we determined that we would take Martin ‘home to die’. We begged the nursing home staff physician to give his permission and by the time we got Martin home in an ambulance our sons had cleared our living room of furniture and a hospital bed was in place.

While Martin was in the step down unit I was thinking about the logistics of getting Martin home (not thinking of him being in a rehab facility)) so our youngest son and a good friend knocked a hole through the wall of our front porch, installed a door and laid a front patio for what I anticipated would be just wheelchair access. It was certainly what we needed to get a gurney to the front door and inside the house!

I have never been sure how all the services were provided to us at home. I just assumed the administrator of the nursing home made sure we had everything we needed. Gratitude again.

Now what? I knew nothing of Martin’s meds. I called the cardiologist to tell him what we’d done and Dr. S. got me started. Blood tests for Coumadin every day to check his INR. How was I to do that when Martin was bedbound? As ever another wonderful person came to our aid. Our neighbor is a critical care nurse in a neighboring hospital and she came every morning before her own shift to take Martin’s blood. I ran the blood to our primary care physician’s office nearby and they did the blood work. With results in hand I could call Dr. S., get instructions and administer the right amount of Coumadin each day.

I became Martin’s ‘nurse’. 21 years of home educating our sons gave me the ability to quickly learn new skills, plus having cared for babies but especially an elderly friend in a nursing home during that time I already knew how to clear up Martin’s residual bedsores. I made sure he had three nourishing meals a day plus two fresh fruit and yogurt shakes as snacks. Then therapists came to visit – a hand therapist and a physical therapist. Martin well remembers the exhaustion he felt taking his first 10 steps from the bed to the door – he slept the rest of the day.

The therapists were both brilliant and so understanding of the chaos of our house. They each came three times a week and taught us what we could do in the days in between. So in effect Martin had therapy 7 days a week – sometimes twice a day when our sons made him do his hand therapy again! Both therapists had so much wisdom and good humor. We are still in touch with Martin’s first hand therapist.

Friends phoned, visited with treats to eat and sent cards and interesting bits and pieces through the mail. They really made a difference. A young 20-something friend, David, was blinded in a family shooting accident in which his father died just a few months before Martin went in the hospital, called regularly to offer Martin the same support Martin had given him at his time of need. They each provided the other with support, understanding and laughter!

We started having outings with Martin in the wheelchair. He remembers so clearly the first time we all went out for breakfast, he has often said “The sky was so blue”. He hated being in a wheelchair and the walker which followed – both spurs to keep up the therapies! On one of those outings to my horticulture club a friend of mine kindly ‘covered’ the nature of Martin’s incapacity by announcing “We are so happy to see Martin back after his accident in the Iditarod Race”. That joke has long lingered and provided much laughter as the story just got amplified over time. How do you explain an aortic dissection anyway? After four months of therapy at home Martin had an amazing custom leg brace made and because he was ambulatory he was admitted to the cardiac rehab center at the hospital. He could now also have out-patient therapy for his hand.

His physical abilities improved gradually. When a therapist asked “What do you want to be able to do?” Martin would always answer “I want to be normal again”. He refused to have velcro shoes, learning to tie his shoelaces again despite that awkward right hand; even learning to sign his name again the same way – he refused to use his left hand! That fine leg brace enabled him to start walking – we even found a lovely cane for a bit of extra stability. We were able to explore and get out in the fresh air together. We found plenty of free things to do together – a bit like forced retirement but now we know better how to get along together and what we both enjoy. Martin could even get in and out of the shower using a shower bench – no more bed baths from me!

I should add that all the professional services were provided as part of his medical insurance. We were so lucky.

You have to know that Martin had quite reluctantly signed up for medical coverage for our whole family just three days before he went in the hospital, fully intending to leave himself off the coverage due to the monthly cost. But the office secretary convinced him of the importance of putting all four of us on the policy – how right she was! We had yet to pay a cent! His company continued to pay the monthly fee for coverage for six months for us all, and a further six months just for Martin. We are so grateful. By then Martin was legally disabled including chronic renal failure and went on Medicare disability. He only has one functioning kidney but we are thankful that it is functioning ‘as well as can be expected for a ‘healthy’ almost-70 year old’ – another miracle.

He does not need dialysis and only sees his kidney doctor once a year but does a blood test for him twice a year. Martin sees his cardiologist every 6 months – a visit we both look forward to. Dr. S. has always been at the end of his cell phone for us – what doctor gives you his cell phone number? Gratitude just isn’t enough for him – he’s the best.

Forward to late December 2001 and Martin is hospitalized suddenly after being at the gym – he is diagnosed with MRSA! We were all very distressed. Dr. S. asked “How could this have happened? I hope MRSA isn’t on his prosthetic valve, we will be in real trouble.” We waited together outside the echo lab waiting for Martin and Dr. S. to come out with the results. Daniel couldn’t bear to stay he was so distressed, so he left. Alexander sat with me and when Dr. S. came out of the room he said “MRSA isn’t on the valve” so we were OK – we had a group hug and all shed a few tears with great relief.

Martin was then in hospital for several weeks in isolation. Finally an IV port was put in his arm and he was sent home to self-administer multiple antibiotics for a further two weeks. It was a very stressful time! Dr. S. said he’d never prescribed such large quantities of Coumadin as he did then. Specific and powerful antibiotics are needed to combat MRSA but they affect Coumadin while at the same time Coumadin has to be kept in balance.

In the fall of 2007 Martin wanted to find work again, particularly to provide me with medical insurance. I was anxious about where he would work and worried about something happening to him. However, he got a job with Starbucks (one of the few companies providing medical insurance for part-time workers) working in the store in the lobby of the hospital that saved his life!

I was happy because I knew there were many people who would take good care of him if the worst happened. He still works there for Starbucks, he has even become a Coffeemaster and has enjoyed meeting many of the nurses and doctors who took care of him in 1999. Remember, since he was in a coma he didn’t know most of the nurses! However, he is pleased to get to know them and over time has built a history of what at least his body went through – and something of what we all endured! Hospital staff have already started coming into Starbucks to remind him “It’s nearly 13 years”. What memories they have. They know the miracle they contributed to. Martin’s words of support to family members currently in the CVICU waiting room have already made a difference.

Our ancient and beloved Volvo station wagon was instrumental in getting Martin about with the wheelchair and eventually back to driving, but only after we’d put him through a 2 hour professional advanced driving check to ensure his reactions were good enough. I don’t think I could have allowed him to drive in any other car, it was safe plus it was an automatic. It had been our workhorse through our scouting years and had 300,000 miles on the odometer. Then one eventful night it was sitting parked outside our house and a cab driver totaled it! Martin had to then accustom himself to driving my old stick shift VW bug – quite a challenge with that weakened left leg for the clutch even though he knew how to drive a stick shift. That’s our only car now although on occasion we borrow Daniel’s when he’s off traveling, or rent a car to go further afield for a weekend. Martin’s still a pretty good driver although we are constantly on the alert for his reaction times and decisions when on the road – he loves the freedom of driving!

So we are approaching ‘lucky 13’! Our lives are full. In 2008 I finally found much needed work caring for babies, working in a daycare for the first time (after our family, caring for babies is my other passion). During these past 4 years I’ve also been doing respite care for my aging mother twice a year – juggling my patients and caregiving at each end of life.

In February of this year I finally found the daycare stress (not the babies!) too much for me (Martin and our sons had apparently seen me on track to emergency surgery! They were all very happy and relieved to learn of my resignation). I am now working to recover from the stress and find out what else to do with my life. Perhaps I’ll write, but perhaps I should go back to focusing again on Martin, enjoying family life and catching up with jobs in the house and garden. Life is too short to go through any more stress!

As I write Martin is attending a Boy Scout weekend, although since it’s close to home he’s not camping out. He has retained his interest in scouting and enjoys driving around the state to gatherings several times a year. We both also love going to concerts where our sons, in their quartet and chorus, sing barbershop harmony. Seeing and hearing them sing together is one of our greatest pleasures in life.

Both our sons are amazing people and lead full lives, are independent, dynamic at work and play, and are both in stable relationships. Alexander got married last year. We all enjoyed a simple yet very happy and carefree day. Both sons have continued to help us in every possible way through this very challenging time in our lives. We have yet to recover from the trauma or the serious financial challenges we’ve all experienced over the past 13 years. I attribute our sons’ strength to forming close family bonds through our home education years. Perhaps no one actually recovers? You just have to move on one day at a time.

Alexander and I freely discuss everything that happened during those eventful months Martin was in the hospital whenever we feel the need – that seems to be our mutual therapy. Daniel I know still finds it a challenge to talk about his experience but despite that remains close to us all and overall seems quite resilient. Neither of our sons has ever used our family trauma as an excuse for not doing their best at everything they tackle, they never complain. Most people do not know the magnitude of what we’ve all been through – except perhaps those of you reading this! Our boys lost all the underpinnings for their future that eventful day in 1999.

Our families and friends have stood by us this whole time. One friend said “I didn’t pray every day, I prayed every minute of every day”. The front desk at the hospital said that one young man came every day to ask if he could visit Martin – we’d said ‘No visitors’. All we know is that he was a Boy Scout – we never did get his name. Everyone respected our desire to cope by ourselves. I had one loyal friend to whom I could say anything that was on my mind. She usually kindly said “You have to put such thoughts aside and just keep going”. We have so much to be grateful for.

Our lessons: Always stay with your patient. Therapy 7 days a week is better than therapy 3 days a week, let your therapist teach you. Family is more important than money. You can always bring your family member home (for a patient’s psychological well being home always trumps nursing/rehab homes). Always be civil. Know the names of staff members and physicians. Feel free to always politely ask questions. Be appreciative of the hard work of everyone who helps you or your patient – write your thank you letters. Take a chance and ask physicians’ office managers if they will accept just what the insurance pays. Keep a journal with you even if all you write about is your own emotions – staff will think you are documenting the case (we never intended to sue and we didn’t). Just choosing a new journal is a very therapeutic. True friends show their colors and are worth their weight in gold. Family support is unending.

Things we’ve learned:
1. A nurse who returns from maternity leave is pulled in two directions emotionally and isn’t capable of making the best decisions on the job, especially if she’s a critical care nurse! (At least two young nurses returning from maternity leave made mistakes in Martin’s case)
2. When you can’t balance the INR of a patient on Coumadin it is because of a discrepancy between diet and exercise. When diet and exercise become stable, INR and thus Coumadin intake becomes stable. No physician has confirmed this, but most know when I’m not preparing our meals Martin’s INR is off!
3. We’ve just discovered that here in Florida medical records are only kept for 7 years. Make sure you have CD’s of every scan and MRI (particularly the one’s closest to your surgery) and all the radiologists’ written reports. Last week we needed a CD of one of Martin’s early scans but they have all been destroyed. We have copies of all the radiology reports but we needed the CD for true comparison with a current CT scan.
4. Keep an updated report of any additional conditions your patient develops plus current meds.
5. Your pharmacist can be a great asset. Ours has been wonderful.

I have just read three books by Atal Gawande MD a general surgeon from Boston. They were a struggle to read because of the details of various surgeries, explaining a lot about what happens in the OR and how physicians learn. Each book made perfect sense to me and reminded me of how much of a miracle Martin’s survival is. I highly recommend Dr. Gawande’s books.

Sunday mornings are very important to us both. We wake up by 9 a.m. and watch CBS Sunday Morning as we did on 6th June 1999 and I say “Thank you Charlie” at the close of the show.

Thank you all for listening. Never give up!

Helen Rubin (Martin’s wife)

Sherra Baxer-54

Name: sherra baxter
Email: sherrabaxter@aol.com
Age at time of Dissection: 54
Type of Dissection: Descending
Date of Aortic Dissection: 15 July 2011
Tell Us Your Story:

The problem I am having is that I had been experiencing the chest pains and aches for a while, i have had hb for several years and between the doctors and myself, it was attributed to indigestion and acid reflux. on the particular day the my ad was found I was at work and refused to med vac out.

So I went to a local emergency room and stayed there for several hrs. while the doctors were giving me a nitro drip and several other medications to get my blood pressure down /finally they decided to do a ct scan and that’s when my tear was found not only that but i had formed a hemotoma which actually save my life I had not known that I had a genetic defect in that my aorta is curvy.

The problem that I have is that after that I had similar pains and ended up being airlifted to the hospital where I stayed in micu for 6 days. the doctor on call chastised be about being fat as he put it and talked to me as though I was there for attention. He then told me that I was initially was diagnosed by accident and to go home and take some alleve and that my problem was muscular.


I’m mobile on my job and do a lot of standing and have a lot of arm movement . What that doctor said may have been true but those very movements and pains caused my ad to be found in the first place. It’s the common practice and my regular doctor refused to see me about my legs numbing after standing for periods of time.

He told me to see my specialist. Are actions such as these common practice and can any one else with ad please give me some answers that make sense. anyone that has ad knows that its frightening and painful, not something for attention.

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!)

Pam Russell-59

Name: Pam Russell
Email: prussell@fidnet.com
Age at time of Dissection: 59
Type of Dissection: Descending
Date of Aortic Dissection: 8 July 2011
Tell Us Your Story:

Ihave Marfan Syndorme. My dad died at 46, my sister died at 62, my daughter has it and I found out when I was 28 but have tried to take care of myself. My husband became 100% disabled and my job was extremely stressful. On July 8th, I took a bite of a hamburger for lunch and felt a pain in my back.

Then it really hit and knocked me out of my chair. I told my coworker to call 911. The 1st and 2nd layers of my descending aorta had ruptured. They have gone in and put an endovascular graft at the top of the dissection and so far so good. However, I still have 8″ that are still dissected. My blood pressure cannot go above 110. I can no longer work, no stress, etc. I am living scared.


My body does not feel right, sometimes I feel like I am burning in the front of my chest, am very weak and my taste is not the same. I have an appt. on October 3rd for a second opinion. I do not go back for another cat scan until March!! How do i live with this. I
thank GOD for each day, but I want to have a life to enjoy my grandchildren. Please, if you have any suggestions or positive feedback, let me know.

My family has been wonderful, but if you have not been through it, you do not understand. Thank 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!)

Jeff Guenther-55

Name: Jeff Guenther
Email: jdjguenther@yahoo.com
Age at time of Dissection: 55
Type of Dissection: Descending
Date of Aortic Dissection: 25 October 2010
Tell Us Your Story:

Hi:

Iwas healthy, went to the health club 5 to 6 days per week.

Oct 16
I had been traveling for business and came home with a head cold. I had a feeling that I came unzipped. I thought maybe something happened while I was coughing.

I woke up Saturday and felt ok later I developed a terrible back ache. I asked my wife to take me to the Emergency Room to be checked out. I was tested for a heart attack, EKG, Glycerin under the tongue, chest X-Ray. Nothing so they kept me for a stress test on the following Monday.

The two days I spent in the hospital I still had an awful back and chest ache. I could not sleep laying down only sitting up with my head on the food tray.

Monday October 18th

I had a chemical induced stress test. The results showed that my heart was in range and I was release. I still had the back ache. I was given pain killer and a blood pressure medicine. I was instructed to follow up with my GP.

Monday October 25
I worked a normal day still not feeling wonderful. At about 8 that night I decided to take the dog for a walk. I first used the bathroom and Wham it hit. I felt like I was torn apart. I didn’t know a pain like that existed. My body knew it was dying and I called out to God for forgiveness.

My wife called 911 and the EMT’s were there in minutes. (I have to say what made this an awful experience was not only the pain, but the expression on my wife’s face. I felt helpless not being able to comfort her) I was awake and able to talk with medics. They hooked me up to an IV moved me to the truck and started giving me pain meds. We were joking and he made me stop because he was trying to stick me.

Hospital 1
As soon as I arrived at the hospital the ER Doc ordered a CT scan. The pretest without the dye told the story. I had a full rupture and was bleeding out. They told my wife I was critical and had maybe a hour to live. There was a 1% chance they may be able to stabilize me and move me to another hospital that could do an internal sten. If they opened me I would bleed out. She said We are going with the 1%.

The calls were made and the first two hospitals could not take me. The third Northwestern Chicago was full but said to bring me down.

There must of been Divine intervention to keep me alive during this time. I do not remember, but I was telling my wife I had three Angels sitting on my bed with me. Somewhere during this time I lost consciousness.

Tuesday October 26

3:00AM
It was too windy to fly so I was driven the 50 miles to NW Hospital. It had been 7 hours since I had ruptured and time was very critical. I was prepped in ER and went to surgery. A Stent was put in to stop the bleeding. A second stent was necessary to redirect the blood.

I was given a two hour rest period and then I was taken back to surgery and my chest was open to remove the blood. I had bleeding in my left leg which was addressed with four large cuts to drain that area also.

Wednesday Oct 27

I came too. I still had breathing tubes and nose tubes. Which were removed shortly. I remember coming in and out of a bright Yellow light.

I stayed in the hospital for 14 days. I was OK but had a hard time with the pain killers. They made me goofy. I learned to tolerate the pain and not take the pills unless the pain was unbearable.

During my stay they regulated my BP and watched my white blood cell count because of the incisions and internal bleeding I suffered initially.

I guess they load you with fluids initially to maintain your BP. I had 57 pounds of liquid that came out in four days. Yikes.

Monday November 8
I was released and sent home with the idea that I should be fully recovered in about 6 weeks.

The recovery took 14 weeks. I had lost all of my strength and had a problem with eating. I think the strength issue was due to my lack of calories.

I went in at 220 Lbs and came home at 181 Lbs. During my recovery I lost another 28 pounds. I found it very difficult to eat. Food tasted bad or Very Salty. The smell of food cooking made me sick to my stomach.

I discovered somewhere that I did not salivate when I ate, so food was like dry cardboard. A dose of Anti Depressant nine weeks in to recovery helped. I went from 153 to 180 in about three weeks.

February 14
I returned to work in February part time. 3 half days a week.

February 28
Half days

April 11
I was full time. still get sleepy in the afternoons.

May 16
Time of writing.

I feel Ok. Still have some numbness from incisions. Get sleepy in the afternoons. Have returned to 5 days a week to the health club. (about 50% of my pervious routine) I see the Surgeon this week for my six month check up.

My Lesson is don’t sweat the small stuff. Tell people how you feel about them (Positive there is NO ROOM to BE NEGITIVE EVER!) your beautiful, you make me smile, man do I love you etc.

I would be remiss if I did not mention that my Wife and Family were Rocks. I could not have recovered had it not been for them. During the recovery there were many times I could have just stopped eating and drinking and passed. I believe I have been to the other side and returned. I don’t remember exactly, but I know I did not want to come back. Someday I will return and that is fine with me. I am God’s humble servant and he may do what he wants with me. For the present I am here to do as He wishes.

Peace Shalom Salaam
Jeff

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!)

Kathernine Bennet-52

Name: Katherine (KK) Bennett
Email: KKthebeancounter@yahoo.com
Age at time of Dissection: 52
Type of Dissection: Descending
Date of Aortic Dissection: 8 March 2010
Tell Us Your Story:

Back in 2004, I had my thyroid removed. I had gain alot of weight and my blood pressure was out of control. In late 2005, I was hospitalized in extreme pain. I felt as it a hole the size of a soccer ball was burning through my chest, right out my back between my shoulder blades. I had only state funded insurance, therefore, I wasn’t givin a CT scan. I was hospitalized for a week and sent home with no diagnoses. I was at home for about 4 hours and then back into the hospital. They kept me there for 6 additional days and told me I had a stomach ulcer.

Jump forward to 2010: I wake up and when I went to the bathroom my left leg went completely numb. It felt like a ton, and I crawled to my cell phone to call an ambulance. I made too much money on unemployment to be eligible for state funded insurance, so when the ambulance picked me up, I told them I had no insurance.

I knew these firefighters and ambulance drivers, they were the best looking men in the “hood.” When I told them that I had no insurance, the 2 paramedics decided that I needed to go to a Heart hospital. They were convinced that my numb leg had something to do with my heart. I was hospitalized for 38 days, was admitted with a aortic aneurysm in my left iliac which damaged my left kidney and shut off the blood flow to my left leg. Upon review of my CT scan, I was diagnosed with a descending dissection that begans at the clavicle arch and extends to my iliac, which is located around the left kidney.


I was not operated on, I was closely monitored in ICU for 27 days. I have been seeing a cardiac surgeon and having CT scans every 6 months. My last scan showed a increase in centimeters and my surgeon explained that at this time, I would not survive surgery. That I was to have my blood pressure and hypertension under control because if my dissection increases anymore that the result would be catastrophic. Yah I’m a little confused? Why didn’t they repair back in Mar 2010?

What is even harder to deal with is Social Security. I’m single, have worked my entire life and am just wanting to love what life I have left. I can’t believe how unorganized and unprofessional this organization has handled my claim. Talk about stressful. I have attempted to live off of “zero” income for over a year now. Now I’ve been left no alternative but to hire an attorney.

Oh here’s the topper! SSA had me investigated, video’d me letting my dog out, sitting on the porch for 45 minutes and patting my dog on his head. The moral of that story is; Your dog is a better friend than the SSA. Thanks for letting me share and YES I have alot of questions, if someone cares to help me with some answers, I would be forever grateful. Katherine (KK).

Contact Katherine

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!)

Marc C-53

Name: Marc C
Email: cota411@gmail.com
Age at time of Dissection: 53
Type of Dissection: Descending
Date of Aortic Dissection: 30 May 2010
Tell Us Your Story:

I was in a crouching position (like a catcher in baseball) on a tile floor showing my 25 yr old son and my 35 yr old nephew something on the laptop when I suddenly started feeling a quickly worsening pain in the middle of my chest. I stood up without saying anything, just knowing I was having a heart attack and walked into the kitchen and looking for the little 2mg or whatever aspirin to no avail, quickly chewed down 2 regular sized aspirin and leaned on the counter with my head in my hands, saying a quick prayer that I would survive this.

Then I felt a tingling weakness in both legs and called my son to help me to the couch. by this time they both knew to call an ambulance w/out me saying a word. by the time I reached the couch, the most intence pain I’ve ever felt in my life started in my lower back-so bad i was groaning and moaning loudly and sort of rolling around, off the couch and onto the floor and I remember my son saying “OMG dad, you’re bleeding under your skin, red and purple” then he started to freak a bit and ran outside to call his mother and wait for the ambulance.


By this time both of my legs were completely numb and useless, I remember having to grab the knees of my jeans to move them at all…wishing i knew what this was, i’ve had a mild stroke, but this just wasn’t the same. I was just praying that at the worst, i’d be in a wheelchair the rest of my life…just don’t take me now…the paramedics had obviously never seen anything like this, and basically didn’t believe us when we told them there was no trauma to my back…it looked as though i’d been beaten with a railroad tie and it was a bit frustrating – them thinking we were lying about my horribly bruised lower back. by the time i was put on the gurney, the feeling was returning to my legs and the pain was subsiding.

I nearly insisted that they let me stay, or have my son drive me to a hosp. my back was still hurting, but nothing like before. after they learned I’d had 3 previous pulmonary embolisms as well as a mild stroke a couple years earlier, they decided on a different hospital, a bit further away. it took the attending docs 3 1/2 hours to diagnose what the heck could this be. i was then taken to get an CT? with contrast- the 3rd one within an hour..as I was wheeled out the tech and I were talking about, because of the hour (3am) my CT’s were being read by a doc in Australia, which i thought was pretty interesting.

I was wheeled into a strange room left alone for @20 sec’s and the attending came in and told me that I was was going into emergency surgery and didn’t wan’t to BS me in any way and told me that what I had was very, very serious and they were just waiting on a cardiovascular surgeon to arrive, and if i had any family in town, i’d better call them and tell them to get down there, because my chances of living through the surgery were slim to none. a night i will never forget…the surgeon arrived and she decided not to even attempt this invasive of a procedure at this time. if i was still alive, she said “let’s treat this with meds, see how you do the next few hours and go from there.”

I remember feeling sheer contempt for the doc who told me i was being prepped for basically a death sentence and relieved at the same time. Strangely the biggest reason for my contempt was what he told my ex-wife and son on the phone and then after getting there, finding out the would be no surgery, and i looked good…i don’t know..almost like i’d let everyone down or put them through hell unnecessarily. crazy, huh? i was broke, out of work, no insurance, wondering if the uninsured factor had anything to do with the decision NOT to do surgery…well, 2 weeks in intensive care, then a week in a less intensive wing, then home with 11 (ELEVEN) medications…i feel pretty good except for the loss of muscle tone that has obviously occurred, and from what I hear, the CT scans w/contrast did some damage to my kidneys…the wanted more pics, but I asked to speak to a kidney specialist first, who basically told me that it wasn’t really worth the further damage that could happen to my kidneys.

They had the pics they needed, and I decided to ask him a question to get a straight answer, and asked ” I agree with you, I’m not going to live long anyway, correct?” I’ll never forget the look in his eyes…he didn’t verbally answer me, but didn’t have to…his eyes said it all. He shook my hand, said “God Bless you” and left my room. I felt both relieved and scared. Didn’t wanna die just yet…too much to do…too many mistakes to make right. so many different opinions from so many different doctors. don’t know if i’m coming or going. I know i cannot pay for my meds any longer, nor a place to live. anyway…that’s the jist of what happened beginning May 30th. I’ve been a professional musician (as was my father) all my life and have a resume that would absolutely blow most people away.

I’ve been very lucky…played professionally since I was 17…into my late 40’s. If you told me ten years ago, I’d be in the position I’m now in, I would’ve told you you were hallucinating, crazy…I’m alone with no one to talk to, so if anyone just feels like shooting the s*** email me, huh?

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!)

Linda Moten-56

Name: Linda  Moten    
Email: llmoten56@gmail.com    
Age at time of Dissection: 56    
Type of Dissection: Descending    
Date of Aortic Dissection:  5 January 2010    
Tell Us Your Story:    
Hi, Brian.  Thank you for reaching out to people with information on various types of aorta dissection. My life changed on Jan 5th 2010 on a Sat morning when my husband Larry woke me at 7am. He told me he have this terrible back pain.He said if it doesn’t get better in the next hour and a half he will need to go ER.  I told him no I am taking you now.

 

   
Larry never asked to go to the doctor in thirty years. So off we went. ER examined him. They told us he might have gall stones. I called my Mom she told me to tell the doc to give him a heart test.The doctors took my advice. Larry’s blood pressure shot way up there. When I went into the waiting room and called my mom to tell her what was going on.The doctors called back where Larry was and told me they are going to life flight him.He has a aorta dissection and they are not equipped to handle.. .Crying and not knowing anything about this illness. I got in my car and drove across town to beat the chopper there.    
     
     
On my way to the hospital I knew that our lives were about to changed. Larry spent 8 days in ICU to lower his blood pressure. He got out no surgery need. Larry takes 672 pills a month to help lower his blood pressure. The doc is waiting for the tear to rupture. That’s good news. So this is what we are waiting on. The doctors gave him 3 to 5 yr After thirty years of marriage this is a bitter pill to swallow.

 

   
Larry rubs his chest and stomach and never complains. He lims sometimes and his legs look weak sometimes. What are his symptoms now? He just always take the meds and think there is no time for repair if rupture occurs.. Please what now should his symptoms be?   Thanks for listening to my story.

UPDATE: 6/17/2017:

Tell Us Your Story: Look up the story of Linda Moten . Aorta abdominal aneurysm 2010. I posted in 2010 and it was about my husband Larry Moten. Well at the time his aneurysm was 4.7 and Doctors gave him 3 to 5 years to live. But it is now 2017 and his AAA has grown to 5.3. Doctors may repair in July. The doctors on this forum did say it’s not a death sentence. And it truly isn’t. So Brian back then if you can remember me I was really freaking out. But Larry is still living. The Meds for high blood pressure has made him bigger however, but nevertheless he’s still here.

   
<a href=”mailto:llmoten56@gmail.com”>Contact Linda</a>

Tom Heffernan-58

Name: Tom Heffernan
Email:emw@sonic.net
Age at time of Dissection: 58
Type of Dissection: Descending
Date of Aortic Dissection: 22 September 2010

Tell Us Your Story: My boyfriend Tom died on September 22nd of this year of an aortic dissection.

At 58, Tom was healthy and full of life. We had moved in together just 2 months before his death. Our relationship was flourishing!

Like so many others, Tom’s illness was misdiagnosed. He was seen in the ER for severe chest pains on Saturday night. They did all the standard heart attack tests (including EKG & chest x-ray) but couldn’t find anything wrong, so they released him after 5 hours with instructions to take Tylenol.

On Monday he saw his regular doctor. His blood pressure and heart rate were normal. . .she thought there had been some trauma to the chest wall and prescribed anti-inflammatories.

Wednesday morning he died.

His father and grandfather also died in the 50s of heart failure. His father’s was thought to be a heart attack, with circumstances similar to Tom’s- misdiagnosis followed by sudden death.


It’s clear to me now that his father and grandfather must’ve had aortic dissections as well, and that whatever caused the dissection is a genetic condition that runs in the male side of their family. I’m guessing the medical community didn’t know about aortic dissections back in his father’s and grandfather’s days.

I’m wondering if Tom may have had Loeys-Dietz syndrome. While he didn’t appear to have any of the other symptoms, he WAS born with clubbed feet. Neither of the other syndromes (Marfans or Turners) fit.

Thankfully Tom never had children, although his sisters have sons. I can only hope and pray that they will have themselves examined.

I am so grateful to Amy for starting the foundation- for the education and research work that is being conducted to save others lives from this deadly condition. We had no idea what had happened to Tom until a co-worker of mine mentioned seeing Amy on a talk show recently- she thought Tom’s sudden death sounded similar to John’s. I went home that night and researched it online. . .suddenly everything made sense. The autopsy report confirmed it.

It is my intention to spend my remaining time on earth doing whatever I can to assist the foundation with its work. The only way I can make sense of Tom’s experience is to ensure that it makes a difference. If even just one other person can be saved as a result, then his death will not have been in vain. How can I help? I will do anything, even if it’s just stuffing envelopes. It’s funny. . .I’ve been searching for a passion all my life. Now I have one.

Sincerely,

Contact Tom

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!)

Venna Wilcox-53

You can post this one, I have put dates in and corrected spelling.
I was 53 in 06 and and 54 in 07.Thank you and hope this is helpful to those who read it.God bless and take care,Thank you for making such a site for us aorta patients etc.

Hi Brian I just came from your site and just wanted to share with you that I had one dissection in May 10 of 2006 and another one in May of 2007, actually it was discovered in April and I had to have five teeth out (infected) before I could have the surgery which was first scheduled for May 23rd but got delayed till the 25th.


The first one was the scariest time of my life, I thought I had pulled a muscle across my shoulder blades but long story short, I woke up in intensive care and Maine Medical Center in Portland, Maine with my daughter telling me I had just heart surgery! My bp was 216/176 I guess when I arrived at the ER. Then in 2007 I learned of another dissection and made preparations to have it fixed.

Since the fixing I now have a AAA and just recently learned that I have CAD, blocked artery..My cardiologist said this is usually a simple procedure to fix it but I am not that simple because of my two dissections and connective tissue disorder (mutation for marfans syndrome) that he wanted to start with trying medicine, so
needless to say I now wear a nitro patch and wonder, just wonder when!!!! The AAA is not in size yet for surgery but close..I feel like I am a walking time bomb!!

Take care and may God bless you,
Sincerely,
Venna Wilcox

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!)

John J. Behrendt-52

Personal Stories: John J. Behrendt

Friends:

There I was… shopping at the “Biggest Souvenir Shop” in Las Vegas with my daughter, when I felt a sharp pain between my shoulder blades and then what felt like a warm waterfall going down my entire back. I thought to myself, “what just happened?”. In all of my 52 years on the planet I surely had never experienced anything like that before. Well, luckily my daughter was driving, so I told her that we needed to go. I don’t think that I could have gotten myself home because the pain was increasing with every moment that went by. We hopped into her little Hyundai Accent (I’m 6′ 3″ at 240 lbs) and sped home. Thank God the passenger seat reclined. Once there, I took some Tylenol and tried sitting in my very comfortable recliner with the built in massager. That didn’t help, so I laid down in bed.


The fetal position was about the best, until I finally gave into my daughters offer to take me to the hospital. Good idea, HUH? Well, you can imagine how that went. At that point I couldn’t even sit down, so I stood, (mind you, for about an hour and a half) patiently waiting my turn. When they called me in it was all I could do to make my way to this tiny room where they told me to sit and try to relax while waiting on the doctor. Yeah, right! Can you picture this? Ok, The young woman doctor comes in, and in her broken English she has me explain my self, to wit I added, please give me something for the pain. She did, and I requested more. She was very accommodating and brought me another shot (of what, I don’t know or care, at this time).

At that point they decided to do a CT scan, then they pumped me full of blood pressure medications. The next thing I knew, I was being whisked off to another hospital by the two most unlikely characters to drive an Ambulance you’ve ever encountered. I remember the ride. I was being thrown from side to side and front to back while laying flat on my back on one most uncomfortable gurney. I was rushed into intensive care. While lying there freezing with 8 blankets covering me, a young male doctor (about half my age) came to the side of my bed and looked down at me. I’ll NEVER forget what he said. “Hi, I’m Dr. so & so. You’re very lucky. (and get this)… I don’t think I could have gotten you on the table fast enough”.

He said that I had had a Descending Aortic Dissection the length of my aorta, and in a split second decision, decided not to open me up. Keep in mind that at this point it didn’t seem that this was really happening to me, with all of the drugs running through my veins. I looked at him, standing there in amazement, and said……..OK.

Well, folks; After 10 days in ICU, and 2 weeks at my brothers home (in Nevada) recuperating, I then flew back to Wisconsin where I now reside with my loving wife, three and some years after the fact. I have restricted blood flow to my arteries, one of my kidneys shut down, I’m on pills (with side effects) for the rest of my life, I have a CT scan and see my cardiac doctor once a year (I can finally pronounce his entire name), and I feel like the luckiest man alive!

After my crash course into the world of AD, and knowing what I know now, I am humbled at how fortunate one can be to have this “Second Chance” at life. To pull through this without going under the knife is remarkable. Kind of changes your whole outlook. Even though I face a 10% chance of living through a very complicated surgery some day (God forbid), I still feel blessed.

PLEASE tell your family and friends to monitor their blood pressure. Thank you.

John J Behrendt

likeneverbefore@sbcglobal.net

Update – 2019: It has now been almost 13 years since that fateful day in 2006. My life has not changed much except for the medication I am taking. I feel like the luckiest person alive. So many people who lived through something like this have not fared as well. I sort of feel guilty even being able to tell you my story. All I can hope is that it may inspire another AD patient to live their life the best they can.

Sherry T Booth-54

Personal Stories: Sherry T Booth

My name is Sherry Booth. I have been a pediatric Registered Nurse for about 28 years. I have worked with medically fragile children for the past 4 years now, and I really love it. My story began on September 20, 2007. My day was like any other day. I stayed very busy, and worked until about 6:30pm that evening. I went to bed about 11pm, very tired, but that was nothing unusual. I woke up at about 3:30am to go to the bathroom. That was not unusual either. When I sat up in bed, a pain ripped through my chest like a knife. I just knew it was a heart attack. I could not breathe. For about five minutes I tried to call for my daughters who were both across the hall in their own rooms.

I could not speak loud enough due to the pain and shortness of breath. When my daughter finally heard me, she ran across the hall and turned on my light. The first thing she said was, Mom, you are as white as a ghost! When I told them what had happened, they immediately started getting ready to take me to the emergency room. I could only sit there in the bed trying to breathe. By then, the pain had settled in my left shoulder blade. It was still stabbing, and still took my breath away. We somehow managed to get into the car, and my daughter drove me to the local hospital.

Upon arrival, my blood pressure was 200s /170s. They gave me Nitroglycerin twice, but it did not help. They started me on a Nipride drip by IV. I was on Oxygen. They started to discuss CCU, which scared me. I had never really been sick before. They chose to call the cardiologist on call. He did not talk to me at all until I had been in the CCU for several hours. I realize now that I gave him all the information he needed to diagnose me, however, aortic dissection is so rare that it did not even enter his mind.(And I had never heard of it!) In my family history, I had a brother with 6 aneurysms, an aunt who died of an aneurysm, an uncle with 3 aneurysms, and a grandmother with an abdominal aneurysm.


My father had died during surgery, and had an aortic root problem. My whole family is very tall. I even had a dear friend who is a physician who told this cardiologist to look at my aorta, and he did not pay attention to this. He scheduled a nuclear stress test, which just about killed me I almost did not make it through that. He finally sent me home to wait on a scheduled cardiac catherization in 3 days. I sat there the whole weekend in terrible pain and short of breath.

On Monday morning, ten minutes before I had to leave for the hospital, they called and told me that the cardiac cath machine had broken down for the first time ever! (May I say here that I believe God intervened?!) When that happened, I took that chance to call another cardiologist who actually listened to me! He was able to see me that morning, and within 30 minutes had sent me for a CT scan. They found the aortic tear right away. It goes from past my aortic curve into my right leg. They have never found the end of it.

Luckily, it did not affect any major organs. They sent me by ambulance to a bigger regional hospital, where I spent 5 days in CCU. Since then I have been on four blood pressure medications. They have had to change them several times due to my blood pressure going up. With each CT scan that I have had, my thoracic aorta has gotten bigger, so now I am looking at having an aneurysm surgery. My doctor has recommended a hospital in Houston, Texas, which is a long way away

from my home in South Carolina. This surgery scares me to death, since it involves being on a heart lung bypass, and opening from my neck to my groin. I would love to hear from others who have had this surgery and lived to tell the tale! Has any one gone to Houston to have the surgery done? Thanks for any advice you have. Sherry Booth, Easley SC

Contact Sherry

Mark Schlieper-58

Personal Stories: Mark Schlieper

My name is Mark and I was medi-flighted to Mass General Hospital 7-14-08 to have life saving surgery for a type B aortic dissection. Ten days before, I had gone to the local ER complaining of lower back pain, and aching testicles. I was given a CT scan and diagnosed with a back spasm and given ibuprophen and vicodin. Curious, I saw my urologist who was treating me for a swollen prostate with the medicine euroxathall and he had no answer but took me off it. Still curious I went to my family Doctor who after reviewing the CT scan, thought perhaps I had a pin point kidney stone.

I had even called my old rheumatologist wondering if the poliomyelitis I had in 2000 had returned { immune system ] but the blood test was negative. I continued to have lower back pain, testicle ache and stress. The results of a recent yearly physical in May showed no abnormality, and my BP was 128/70, pulse high 50’s. At 11am 7/14/09 while sitting at my desk in my home office a crippling pain exploded between my shoulder blades. I knew something was wrong. My wife Pam, took me to the Portsmouth Regional ER where I walked in and collapsed.

My BP was 287/105, the pain was excruciating and I was given morphine. Georgette, the RN looked at the Dr.’s and said she wanted me CT scanned for aortic dissection ASAP. I owe my life to her and Bob the chief of radiology whom I know personally. It was confirmed per the CT. It wasn’t long before the helicopter lifted off and I was staring out the window watching the coast of NH pass by on the way to Boston, my wife Pam lovingly being strong, holding my hand telling me I’d be ok.


After landing, the rest was told to me later. I had 1 Dacron covered stent and 3 stainless mesh stents put into my aorta. I went back into surgery the next day and had my leaking gall bladder removed and was “tented” as they observed my liver which was failing I believe from blood loss. They put a bypass to my liver and it was fine. After 2 weeks of

dialysis the Dr. stented my kidneys through endoscopy. I arrived home 8/8/08. Returned to MGH starting 8/22/08 with phantom pain, stayed 3 nights. Recovered slowly at first, went to vascular exercise Oct. and Nov. Taking BP meds and feeling remarkably well. Still on treadmill and trying to do more. Coughed uncontrollably before Christmas while lying on sofa and caused a incisional hernia which still bulges about the size of a 1/2 an orange. Note: If your going to cough stand up!

Found out at 6 month check-up at MGH that my vascular surgeon wants to put a small stent between the first and 2nd stent, about 3 centimeters, there is a 1mm bulge which is small but I gather this is precautionary. Scheduled for endoscopy 2/23/09 at MGH. Otherwise, all looks excellent. During this procedure they will remove spinal fluid so as to help with the free flow of blood to my spine and reduce the chance of paralysis to 1-4%.

I discovered this site yesterday and am so thankful to Brian and the wonderful people sharing. I hope to contact many of you to share, and promise an update after my release from the next surgery. Mark age: 58, father of 2 great college girls and married to the most wonderful woman in the world.

***update***

my event was 7-14 08, not 09. i had polymyocytis in 2000 not what is spelled in my story.

Contact Mark

Michael Knox-52

Personal Stories: Mike O’Connor Knox

Michael O’ Connor/Knox, my fiance of 13 years, was diagnosed with a Type B Descending Aortic Dissection 2 years ago on August 3, 2006. He was 52 at the time and had a history of high blood pressure. His mother and her twin sister both had aneurisms in the brain and had stents put in when it was still a new procedure. My ex husband had high blood pressure so I knew a little about it and I had finally convinced Michael to go to the VA here in San Diego to get his blood pressure under control. We also requested and had an MRI done to check his brain for any aneurisms a few months before the dissection. We had no idea that the aorta can also become aneurismal.

Michael kept his blood pressure in check for a while and then got lax and forgot to refill his blood pressure meds. I told him we could go to the pharmacy and they would give him some until he could get the refill but he was stubborn and didnt listen. Instead he started taking his daily pill every other day since he was so low. He had been out running some errands that day and when he returned home he told me he had a really bad pain between his shoulder blades and I needed to take him to the ER. Due to a bad experience at the hospital closest to us, he wanted me to take him to VA 20 minutes from our Home. I knew the ambulance wouldnt take him there and didnt have time to argue with him so I got some of the neighbors to help me get him in our car and I drove him to the VA. I pulled up to ambulance doors and lied saying he was having a heart attack because I knew they would see him immediately. While I parked the car they did a CT scan on him and had the diagnoses within 20 minutes, the time it took me to park the car and walk to the ER. They told me his blood pressure was 200/110 and he had a dissecting aorta and that the next 24 hours would be critical to get his family there and his things in order.

I thank God every day that I took him there, the Dr. on duty (whose name I didnt get) in the ER had just been to a class and knew what to look for. They gave him Morphine for the pain and told me he would be admitted to the ICU and only time would time would tell if he was going to make it. If he did survived it could be controlled with medicine and they wouldnt have to do surgery. I got him settled and went home to our 12 year old son who had stayed with a neighbor. I called the rest of the family to let them know what had happened and started praying and doing some research. I didnt have the internet at home and had to research on my breaks at work. That is when I found this site and wanted to eventually add our personal story so that it might help others. I just got internet at home this week I’ve been busy to say the least.

He was in ICU for two week until they got his blood pressure stabilized then another week in the step down unit and then home. The nurses were great and got his blood pressure down to the 120/80. He takes 16 pills a day, not including his pain medication and potassium and, to keep it there but he is alive. He is taking Clonidine, Felodipine Diltiazem, Lisinopril,(no longer takes due to high Kriatin levels in kidneys) Furosemide, (for Edema and Hypertension) replaced with Bumetanide and Spironolactone. He also takes Metoprolol (a beta blocker) Baclofen, Amiripline,(for back pain). Omerazole,(for stomach ulcers) a stool softener and Simvastatin (for cholesterol). I got 2 weekly pill organizers so he only has to worry about one container 4 times a day and I only have to do it every 2 weeks. The VA here is great they are affiliated with UCSD Medical School so he had a team of Doctors and interns and some great nurses. All the Doctors were just amazed that he had survived and that the tear had only gone through the first layer and, as we found out just this year, was torn from the aortic arch to his groin area 23 inches. Of course he was terrified all he heard was there is nothing we can do go home and spend time with your family. I heard its not bad enough and we wont fix it until we have to. I made them draw me a picture and then I drew him one.


Right after he got home he had an abscessed tooth that had to be pulled and a boil under his left arm that had to be lanced. We have been doing the scans every 6 months and have seen the surgeons 3 times so far. The first surgeon told us theres good news bad news. The good news is its not bad enough to do surgery and the bad news is we will see you in 6 months. They did an intravenous test a nuclear die and put him over a Geiger counter to make sure there was no blockage to the kidneys. Then we saw a Kidney specialist because his Kriatin levels were high. There was no blockage so I asked the Doctor if it could be due to something he ate like shell fish and he said yes and no. It wasnt something he ate but it could be one of the pills he takes that ends in pril. I told him he takes Lisinopril every day and we had to wait for his primary doctor to tell him to stop taking it and since then his levels have been normal. We saw different surgeon at the one year check and we learned more from him than all the rest put together. Michael also requested to see a counselor and it helped a lot for him to get ok with it. They weren’t use to someone requesting help and had to set up a hole new category for him who had too much support unlike all their other patients.

Michael got pneumonia this last July and was in the hospital for a week. Then his weight went way up and the Edema got bad and his already swollen feet and legs got worse and were actually weeping from some old wounds. It moved up his body and from sitting his groin swelled to 4 times the normal size. The Doctor admitted him again for 3 days to get the water weight off. His potassium levels were also extremely low and so they changed some of his water pills and he has to take 8 potassium pills a day now. He lost 25 lbs, from 345 to 325 but it is really hard for him to get any exercise when his feet are so swollen that it hurts to walk and he cant wear any shoes. His primary doctor increased one of his water pills and forgot to tell the pharmacy and just when all the swelling was finally starting to go away he ran out of pills and we were without for 2 weeks and the water weight is just now starting to go down again. Then a few weeks later he fell down the stairs here at home and I took him to the ER and they did his annual scan that day since he was there in the ER he got moved to the front of the line.

Then we were scheduled to see the heart and lung surgeons again and this time they said they wanted to do surgery because his aneurism had grown I asked them if it had become an aneurism (in my mind it wasnt that far yet) and he said it was
only aneurismal. He said it had gone from 5.3 to 5.6 and they wanted to do surgery before it became an aneurism and that he needed to lose weight before the surgery. I asked them if the cough from the pneumonia could have made it larger and they said no. One doctor (intern) gave us the scare you to death version, you could become paralyzed because of the blood supply to the back or die from other complications. The other doctor came and he had a better bed side manner and said that it was only a 3% chance of paralysis and they would have to get together with the other doctors for the complicated part in the middle which made us feel a little bit better. They requested and did another full scan at our request instead of doing two, one upper and one lower with contras, and then we scheduled another appointment. Now they said that it hadnt changed and they would not do surgery yet, see you in 6 months. I asked him what the size was and he said they didnt put it in the report only that it hadnt changed. Back on hold again but it could be worse.

Sorry to go on but I think it is important and this might help others to know you are not alone out there in your frustration. We have tried to be vigilant and one or two of us goes with him to every one of his Doctors appointments and we ask lots of questions. I would like to thank you Brian for being an angel in my time of need. Michael was diagnosed with Sever Sleep Apnea. That means no recuperative sleep to heal. He now sleeps with a CPAP machine and he feels it has help him a lot

Mike and Juli

Vickie Swing-57

Personal Stories: Vickie Swing

I am a 57 yr old female that has never had any heart or blood pressure problems. On 9/24/08 I awoke with the most severe pain in my upper back that I have ever experienced. I was in Indiana visiting my family, so I told my mom I didn’t feel well and we went to the local er. The pain was so severe all I can remember is begging someone to please stop the pain. They did an ekg which was fine and then a CT scan. I was immediately life lined to Methodist Hospital in Indianapolis. I don’t remember the flight or even being admitted to Methodist although my family tells me I was awake and talking.

They were giving me morphine and Fentanyl for the pain. On my third day at Methodist I went into a coma that no one seemed to be able to explain. I was in that state for a full week. After waking from the coma I honestly did not know what was going on or why I was there. Very little was explained to me about the aortic dissection, they were more thrilled with the fact I came out of the coma. I was released from the hospital 4 days after waking from the coma with limited instructions. I was told to keep my blood pressure at or below 140, no physical exertion and no lifting.


The next day I noticed a hard knot on my left arm where an IV had been, so I went to the er and discovered I had a blood clot. This was treated with antibiotics and heat compresses. It is still there. I recently saw a cardiologist in my home town an he filled me in on all the information that was not given to me at the time of my dismissal. I have a descending aortic dissection that starts at the subclavical area and goes past my left kidney. He said he has never seen anything like it before and can not actually believe I am alive.

The lack of blood flow to the kidney is now affecting the function of the left kidney. He says the experts at Methodist are doing the right things. They are hoping that scar tissue will close off some of the dissection because if they tried to fix it surgically now I would not survive the surgery. I am supposed to keep my blood pressure at 120 or below and heart rate at 60 or below, not always an easy task. I have had to quite my job in Maine and move back to Indiana permanently, so now I have no insurance and no income. Needless to say I am terrified.

Thanks for letting me vent

Vickie

Elizabeth Maul-56

Personal Stories: Elizabeth Maul

I suffered my aortic dissection on Dec. 23, 2006. I was 56 and had never been diagnosed with high blood pressure or any symptoms that would have lead to early detection. I was an active mother and elementary school teacher. I was cleaning my bathroom, preparing for family visitors for Christmas. I was scrubbing the shower when I was stricken with severe pain in my back. I really thought I had pulled a muscle in my back between my shoulder blades. I immediately sat down and tried to relax to see if it was a cramp. Then I went to the living room to lay down on the floor to see if I could stretch it out. When I tried this, I could only roll up into the fetal position, as the pain was so intense.

My daughter was home for Christmas and because she isa 911 dispatcher, she immediately called 911. I told her to pray for me, because whatever was wrong, it was serious. We both began to pray, and my cocker spaniel licked my face as I cried in pain. Soon my husband arrived home with my other daughter. They had been Christmas shopping and had received a call to come home immediately. I was glad they did, I was sure I was dieing. When they arrived I could barely breathe because of the severe pain. The EMT’s arrived soon thereafter.

Their immediate tests showed no heart attack symptoms, but my excessive sweating and excruciating pain alerted them to something abnormal taking place. Pain medication was administered as well as nitro glycerin. Nothing could alleviate the pain. The trip to the hospital went quickly, thank goodness. I was taken to the local, small town hospital in Somerset PA. I tell you this because it really is a miracle that it was diagnosed so quickly. After an ekg, eeg, and other quickly administered tests, they did an xray and quickly a CT scan. I either had passed out from the pain, or was given something to relax me for the tests, because I do not remember them, but I do remember the ammonia capsule waking me up.

I remember hearing the ER doctor telling my husband that I had a dissected aneurysm, their term for aortic dissection and was going to be life flighted immediately upon arrival of the helicopter to a cardiac unit about 30 miles away for surgery. I did not expect to live to see the hospital. I kissed all of my family, my sisters, Father, husband and daughters good by. I cried because I had not yet said good by to my son.  The trip to the hospital was a beautiful one. I remember the sunny bright blue sky with a few white fluffy clouds, very unusual for a Somerset Winters day.


I was in no pain. Either the morphine was working, or God had me wrapped in His loving arms. I was at peace. Even the attending EMT wondered if I was still okay. I told him I was, but that he needed to take a helicopter flight in Maui if he really wanted to see something beautiful. I was also humming some Christian songs I had recently fallen in love with from KLOV, the best Christian radio station ever. The surgery team met me upon arrival. By then there was no more pain stabbing me in the back. Their continued tests showed the dissection had stopped and the high blood pressure medicine I was given was doing its job. However, the tear was at least 23 inches long and spiraled the entire length of my aorta into my left leg. There were many possibilities of complications. I was admitted to the Cardio ICU.

I was on some serious blood pressure medicines. Many CT scans were done to determine if damage was done to my kidneys. At this point, Im sure there was more stress for all my family. It was now Christmas Eve. Maybe our last together, but everyone worked very hard to be brave. We didnt know what we would soon be facing. Emergency meetings were called with the specialists to determine what course of action they might want to take. Christmas came and went. Family came and went. Specialists came and went. God was there with me all the time. Except for some very uncomfortable sleepless nights being hooked up to many beeping machines with alarms going off regularly, I seemed fine to myself. I was released after 7 days on 4 serious doses of medications, with the expectations that I would seek  follow up treatment with a thoracic/cardiovascular specialist in Pittsburgh, PA.

I have continued with CT scans every 3 – 4 months. My doctor has said that as terrible as a 23 in. tear is, everything that could have gone right has and the tear spirals away from every other branch artery or organ. I am relatively pain free, but live with the concern that something else could happen. I also have periods of anxiety. Why did this happen?

Why did I live while others do not? I wish there was more understanding of the cause, more for my family than for myself. I pray they do not have to go through this. I have retired from teaching, and continue to thoroughly enjoy life. I recently bicycled at least 400 miles over a 3 month period in Florida.  I completely give God the credit for putting all the people in place that day to save my life. Every day is a gift.

“Live well, Love much, Laugh often!”

Contact Elizabeth

Shawn Gallagher-51

Personal Stories: Shawn Gallagher

In 2005, I was a healthy 51 year old male.  Just under 6 feet tall weighing in at around 225 pounds.  I had never smoked, drink moderately (most of the time), and exercised 3-5 times a week running 4-5 miles in 45-60 minutes.  I had retired from the Army in 1997 and was working with another federal agency in the Hampton Roads area of Virginia.

At about 3:00 AM on October 5, 2005, I awoke with a very sharp pain in the middle of my chest.  I stood up and had no relief from the pain so asked my wife to call 911.  Within 30 minutes, I was at the emergency room at Riverside Hospital in Newport News, VA.  Because my blood pressure was so low, they did not administer any medication for heart attack.  About 9:30 AM they performed a heart catheterization and as they were running the catheter up the aorta they found they were going in and out of false lumens.  Luckily, the hospital has a team that trains for aortic dissections and they began operating around 11:00 AM.

I came out of surgery around 6 or 7 PM, after they had repaired the aortic arch, installing a small (2 cm) Dacron graft.  While I had no heart disease, one of the arteries feeding the heart was so dissected I also received a single bypass before they could restart my heart. It took me about three months to recover and return to work, and like many others have noted, I was unable to find much information on what kind of life I could expect with this dissection.  As a retired military service member I received my follow-on cardiology work at Portsmouth Naval Hospital.  The staff there was excellent and very helpful.  The follow-on MRIs and CAT scans showed that my aortic dissection is from the carotids to the iliac arteries, so both the ascending and descending aorta is dissected.  Additionally, some of the false lumens carried the majority of the blood flow.  Another factor was that my aortic valve was leaking because of the dissection and it was not clear how long it would be, if ever, that additional steps would have to be taken.  Throughout 2006 and into March 2007, I rebuilt my strength walking my neighborhood with some light jogging around the cul de sacs.

In March 2007, the cardiologists informed me that I was heading for heart failure because of the leaking aortic valve.  They said the aortic chamber of the heart was enlarging very minimally every 3 months, but that it was steady over the preceding 14 months, so much so that my mitral valve had also begun leaking.  They referred me to the surgeon at the hospital and he recommended that I have aortic valve replacement surgery in April or May.

At this point, I began doing some investigation and found that the hospital where they proposed to do the surgery did roughly 350 valve replacements a year with a very low mortality rate.  However, no one could tell me how many of those operations were on people whose chests had already been cracked by earlier heart surgery.  Consequently, I researched the issue and found that Cleveland Clinic performed in excess of 2,000 valve replacements a year and over 600 of those were on patients who had undergone earlier heart surgery.  Thankfully, I was able to convince Portsmouth Naval Hospital and my primary medical facility to refer me to Cleveland Clinic for assessment and surgery.


In May 2007, my wife and I went to Cleveland Clinic for evaluation for aortic valve replacement surgery.  The cardiologists and surgeon were wonderful.  After a battery of tests they agreed I needed the aortic valve replaced, but also recommended I undergo an elephant trunk procedure.  This procedure is two surgeries.  The first surgery combines the aortic valve replacement with the replacement of much of the ascending aorta and aortic arch with a Dacron graft.  It also leaves a portion of the graft to be extended in the second surgery to replace a portion of the descending aorta.   When I asked why the descending aorta needed replacement the surgeon told me a portion of my descending aorta was distended to roughly twice the normal diameter for my height and weight (6 and 225 lbs).  That certainly sounded to me like a serious aneurysm waiting to happen.

I had the first surgery performed on July 9, 2007, and it was a long surgery.  The aortic valve replacement was very successful and the placement of the graft went well.  However, my recovery was quite difficult with an extended stay in ICU.  However, we were out of the hospital on July 21, 2007.  Over the following three months, I recovered and went to cardiac rehabilitation so that I was able to have the second stage of the elephant trunk procedure done on October 27, 2007.  This procedure required the removal of a rib and the deflation of a lung so the surgeons could remove about 5 CM of the descending aorta and replace it with the pre-positioned graft material coming down form the aortic arch.

This was followed by a short ICU stay and a couple of weeks in the hospital, returning home November 15th.   I did not have any gout after the second surgery, as I had after the original surgery in 2005 and in July 2007.  Additionally, periods of weakness in my legs after standing, which were prevalent after the July 2007 surgery, disappeared.  Both these observations by me confirmed the surgical teams observation that when they removed the clamps after the graft was completed they noticed a marked improvement in the perfusion of blood to my legs.

I returned to cardiac rehabilitation in December 2007 and was able to return to work part time in January 2008.  I am currently back to work full time.  I am able to walk 4-5 miles without undue effort.  In addition, I have begun alternating jogging and walking so that over 20-30 minutes I walk, jog, walk, at 2-3 minute stretches over the entire 20-30 minutes.

My first cardiology appointment after the valve replacement showed some recovery in heart size, I am scheduled for follow-on echocardiograms, and CAT scans in the next two to three months.

Medications are relatively minimal, blood thinning for the mechanical aortic valve, blood pressure medications for obvious reasons, and cholesterol and triglyceride medications.

My surgeon told me that I can lift and carry up to 50 lbs, run, do light weights, swim, bike and do light yard and house work.  As long as I keep it under 50 lbs and dont do any straining I can resume a fairly normal life.  So far Ive been able to return to work, drive, do light yard work and house work, use my chainsaw, and exercise 3-4 times a week.

There have been a few downsides beside the trials and tribulations of two major surgeries.  These include:

  1. Some loss of feeling in my right arm on the underside of the forearm (probably arising from the incision on the upper right part of my chest so blood could be circulated bypassing my aorta and heart).
  2. Some loss of feeling in my left breast and around the incision on my left side (where the second part of the elephant trunk surgery occurred).
  3. Loss of the left testicle due to loss of blood flow (either due to the descending aortic repair or the multiple incisions in the groin so blood could be circulated bypassing my aorta and heart).
  4. The original surgery in 2005 resulted in some memory loss mainly associating names and faces (never a strong suit of mine) and some short-term memory retention issues that have been manageable with judicious note taking.

The upsides have been:

  1. Over two years of quality time with my family.
  2. A sure fire way to cut short insurance sales personnel.
  3. A slightly more enhanced desire to not put off things until tomorrow (luckily I always felt that was not a good plan for living a happy, full life and was pretty good about implementing that attitude.)
  4. Meeting excellent and dedicated medical personnel who have positively impacted the lives of my family and me.

I have nothing but praise for the surgical team at Riverside Hospital, who did my 2005 surgery and the staff at the emergency room who have seen me through several visits as we all adjusted to living with a dissection.  Without their outstanding training and efforts, I would not be here today.

I also have been very fortunate to be attended to by one of the finest cardiology clinics I have seen.  The cardiologists and staff at Portsmouth Naval Hospital have diligently followed my progress, worked with me to avoid my being a cardiac cripple, and made a timely diagnosis of my need for the aortic valve replacement.

Finally, I cannot tell you how much I appreciated the surgical staff at Cleveland Clinic who performed the aortic valve replacement and elephant trunk surgeries.  They did a wonderful job that I am very thankful for receiving.  Also, the nursing staff at Cleveland Clinic were excellent in their care of both me and my family.  In my opinion, Cleveland Clinic deserves its long-standing rating by U.S. News & World Report as the number one heart hospital in the country.

Contact Shawn

Debra Berta-52

Personal Stories: Debra Berta

Hi Brian:

I am a new member and I am not sure how to enter the conversations so thought I would start by sending you my story and you can reply to give me tips on how to talk with the other members.

At the age of 52, healthy, non-smoking, controlled blood pressure, I was brought to a whole new place on June 18, 2007.  I had just completed a 45 minute cardio workout at the gym and was doing pull ups on a gravity assist machine when I felt a strange sensation in my body.  No pain initially, just a sense of something tearing, then a warm feeling circulating in my pelvic area.  A minute later, severe low back pain.  I had injured my back in the past so thought that was what it was.  I left the gym to go and rest at home, but the pain increased so I headed to my local doc.

My blood pressure at the docs office was 196/100 which scared me a bit, but they attributed that to the pain.  After he examined me, he diagnosed a pulled abdominal muscle, prescribed pain meds and sent me home.  The next day I still felt terrible and by evening developed a fever so my husband and I headed for the emergency room at the largest hospital in the area.  After waiting 2 hours I was seen by the ER doc who did a quick exam, asked all the normal questions and informed me that he thought I had a kidney infection.


I never saw him again in the ER, just a nurse who gave me antibiotics by IV and my discharge papers. Three days later, with no improvement, I went back to my local doc.  He looked at the lab work done at the ER and was surprised at the diagnosis since it didnt indicate a kidney infection.  So he ordered more labs which looked normal, then sent me for an ultrasound at the same hospital I went to initially.  At this point, I truly believe I had angels around me as I went through three ultrasound techs due to shift changes at the hospital to get my savior.  She was so calm and kept looking at the same area over and over which told me she was seeing something.

After that I was walked down to the ER again where I was informed that I needed a CT because it appeared I had a tear in my aorta.  My mind was racing then.  I had a million questions.  Like, what does that mean?  Am I going to die?  Im not bleeding so what gives?  I met with the vascular surgeon, who by the way, had very little bedside manner must be a trait for that specialty.  He explained that I have a descending dissection from just under my left arm to the pelvic floor and surgery would be extremely risky but that this could be managed with medications.  He also told me there was a chance of death, but if it was any consolation, he hadnt lost a patient yet on medications.

That was so comforting NOT!  I was sent to CCU for the night, hooked up to all the medications and morphine for pain, the only thing I liked, then to the general population for a couple of days and home.  It was such a whirlwind experience for me with little explanation or answers to my questions.  I have done my research online about this condition and cant find any tangible reason why this happened.  I have no family members with this or any cardiac occurrences and I was a healthy woman before.  Now I take my drugs, try to push past the fear of exercising and wondering if any little ache or pain is going to kill me.

I am glad I found your website to know that there are a lot of us out there in the same space.

Thank you.

Debra

Barry Whitlock-54

Personal Stories: Barry Whitlock Story-From down under

I have been receiving emails from Brian for some time and as with all of you, I have been dismayed by some stories and motivated by others.

I thought it was time to share my story as one of the questions I, together with my family asked was what is now my life expectancy? I remember being told that the doctors knew someone who was still alive after some ten years and that was all I could find out. Any way, this is part of my story.

I still remember the pain radiating through my back into my chest as if it was yesterday. My immediate reaction was God, Im having a heart attack and I said goodbye to my wife, son and daughter-in-law who were all standing near me.

I said Im having a heart attack and my son said settle down Dad, you are too fit.

I remember the ambulance arriving and drifting in and out of consciousness.  I dont remember too much else for some time. Fortunately, I had been taken to the Prince Charles Hospital in Brisbane, Australia. There I came under the care of Professor Malcolm West and his incredible team. For that I will always be grateful. I was told that I had had an aortic dissection. That meant nothing to me as I had never even heard of it. When I could think straight, my first thoughts were I wonder how long I have? That was in September 1993.

I had a thoracic aorta dissection and remember little of what happened during the next few days. Eventually, I was told that the dissection had attached itself back to the walls of the aorta and I wouldnt need an operation for the present. I understand that was due to the short length of time in my being treated and of course the excellent care that I received.

I lived only ten minutes from one of the best cardiac hospitals in the world and an ambulance happened to be only a couple of minutes away.

I dont remember too much about the next few days except for the wonderful medical staff who seemed to be around me constantly.


After a few days I went home and still remember lying in bed looking out at the garden and thinking what a blessing it was that I was still alive and could appreciate my family and friends who were around me. I do remember how weak I felt. I had never experienced a feeling like that. You see I had played Squash Rackets professionally in Europe and had been National Squash Coach to three European Countries. My son was right. This couldnt have happened to ME I WAS too fit AND only 54 years of age.

Well, my Squash days were over but I returned to work as a Fundraising Consultant a few months later. Regular check ups were in order at the Prince Charles Hospital and a couple of years later I was told that the aorta needed to be repaired as it was approaching a dangerous dimension.

It was then that I met another team of specialists who performed the operation headed by Dr Michael Gardner, again at the Prince Charles Hospital. How we can take these highly trained, dedicated people for granted that is until our life is in their hands. I mean that literally. Those of you who have had this operation know how I feel!

Again, after some time recovering I returned to work once again. My wife had been diagnosed with breast cancer in 1988 and had been operated on. She had recovered and had five good years. Then in 1994 it reemerged, this time in the liver. After a great deal of chemotherapy it seemed she would lose this fight as it then went into her bone marrow.

I was then diagnosed with prostate cancer and went into the Royal Brisbane Hospital at the end of March 1997 to have my prostate removed. I was told they werent sure as the cancer may have broken out marginally. I came out of hospital on our wedding anniversary and my wife died four days later.

I once again returned to work and of course regular check ups. In 2002, I was once again told that the aorta had reached a dimension were it needed to be repaired. So once again, back into hospital were Dr Gardiner performed an operation on the top of the arch of the aorta. For those of you who are, like me, ignorant of most of the inner parts of our body, that is the part of the aorta where the blood vessels go to the brain. It was an eight hour operation and again thanks to a wonderful and understanding medical staff, I lived to fight another day. You see the op does affect your thinking and I tried to escape from the hospital and still in my pajamas I couldnt understand why none of the taxis at the hospital taxi rank would let me in their car. (This was two days after the op) Well, the staff eventually found me and cared for me unbelievably, even though I accused them of trying to kill me.

As you can read, I survived and am still working as a fundraising consultant even though I have been told that the small part of my aorta between the last graft and my heart valve may have to be replaced.

This is the first time I have tried to put this all on paper and already forget many of the details.  Here I am some 14 years after my dissection, almost 69 years of age and still working full time. I refuse to give in after all the marvelous work that has gone into keeping me going.

I am happy to receive any emails if any of you would like to chat!!!

Contact Barry

Steve Crump-50

Personal Stories: Steve Crump

Hi Brian, It was nice talking to you this afternoon. This is my husbands story from my point of view. Steve is 50, active, type A person into martial arts, weightlifting & is a contractor who builds homes & apartment buildings. He is very muscular & a bit over weight in the belly. Our story begins on Oct.20th 2006. We were in bed when he looked at me and said Im in trouble, something is not right, its my back. When he was finally able to get himself up, he showered hoping it would help, dressed & said I have to go to the ER. His left leg had gone numb & he was unable to walk. I pushed him in an office chair to the car & took him to St Helena Hospital. The ER doc was great, after giving him a brief history he ordered a ct scan which confirmed the descending aortic dissection. This was less than an hour after presenting to the ER. Dr. Look, the ER doc knew it wasnt a heart attack & felt he was having a dissection. The surgeon, Dr John Jacobson explained the risks of surgery & the medical management procedures he would follow. He was taken to the ICU. The next afternoon, he lost the pulse in his left leg & was prepped for surgery. There was difficulty inhibiting Steve, it took an hour and by the time they had him down, he lost the pulse in his right leg. Dr Jacobson came out and explained the new operation they would perform. The surgeons were Dr. Jacobson & Dr Tetz, a thoracic surgeon. So, instead of an incision in the groin area, he was cut from his chest to his groin. They closed up the false lumen, which was supplying blood flow to his legs and opened an area in his true lumen, used a small graft (because the aortic wall was to thin to sew on) and somehow (I dont remember the details) reconnected blood supply to the legs.


It was made clear to us that this was a very complex surgery. He was in ICU for 8days then MCU 2 more days. He has constant left leg pain & numbness and has not been able to feel like he is recuperating. He looks and feels very very ill. He has lost 50lbs todate. One month after surgery, I took him back to the ER because he was so ill & unable to eat or sleep & had a fever and was very clammy. He was admitted & had tests run but we were told he must have caught a cold or flu. His temp. was 103 in the ER. One month after that, I took him back again to the ER. This time because he had back & chest pain & was coughing up bloody mucus for days. His PCP had him on antibiotics but he was told to go to the ER if he got worse. When he stood up and about passed out and could not walk, I took him in. We got Dr. Look again & he did not see signs of pneumonia but admitted him for further evaluation. His kreatinin levels were to high to do a CT scan so they did a V/Q scan which confirmed blood clots in his lungs. He was in the hospital another 6 days. We were also told that his liver levels were high. Should be around 50 & he was at 300, but the numbers were going down each day & he tested neg. for hep A, B & C. so, nothing was done about that. He is now home with oxygen at #1 level. Has added cumadin to his many other meds he takes. I dont have the list but from memory it is: Toporal 100mg, Potassium, adavan, lasix, cozaar, & a newly added Zoloft. He is very depressed and refuses to take any pain medication. He was given perceset, & a pain patch of 100mg of something?? He has a Kidney Dr. Stuart Bursten, M.D.. a lung Dr. Dr. Rasavi, and a cardiologist, Dr. James Lies. I am looking for a new PCP as his is 1 hour drive from St. Helena, our home town. Well, thats the medical part in a nut shell. On the day after his surgery, Steve & I were married in the ICU by his partner & good friend. Weve been engaged for 25years & had a quickie wedding with 2hours notice! At least one of us got to wear a gown! Thanks for listening Mrs. Sandy Crumpmorecrump@yahoo.com

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