Ruputured Dissected Aortic Aneurism

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Ruputured Dissected Aortic Aneurism

12 November 2007

I am a 53 year old male that suffered a ruputured dissected aortic aneurism October 1st 2007. I spent 21 days in the ICU and 6 days in general care. It all started with what felt like a knee to the middle of the lower back by a NFL lineman that radiated upwards to my shoulders. That was followed by same lineman siting on my upper chest. At this point I thought maybe I had strained some back muscles a few days prior and this was payback. about one hour later one of my legs had a tingling numbness to it so I woke up my wife and said let's take a trip to Desert Banner since it was pretty close. Wound up in surgery about 5AM with a 4 percent chance of survival. I don't think there is any way I can fully express my feelings to the lead doctor and the rest of the surgical team that pulled me out of the mud.

I was intubated for 14 days and in the roller cage for 2 days. Thank God I remember very little of that. I became somewhat lucid the day they pulled the tube out. Since that day all my taste sensitivities have been 4X normal. This means that pretty much all of the foods I had enjoyed have way way too much flavor and I can't eat them. On top of that my tongue is extemely sensitive to touch which makes a lot of foods hard to swallow. Has anyone else experienced this and if so how long did it take to get back to normal?

I will submit more later but for now the problems with my tongue are driving me crazy. Can someone shed some light?

Thank You.

Update 12 May 2008

First off to those who wrote me encouraging, supportive letters, thank you. Your support is much appreciated. I have temporarily lost access to those emails after updating the OS on my computer and thus have not responded (I will recover them soon). I had a rough time after I originally posted on this forum and never made an update as I planned to. So here goes.

After returning home from the initial surgery, saying I had my rear end kicked royally would be an accurate description. I could hardly eat or drink anything. Canned pears and some bland fruit juices were about it for four weeks. Everything I tried made me want to hurl as soon as I tried to swallow. Spoon-sized shredded wheat, a cereal I had loved previously now felt and tasted like a mouth full of soaked wood splinters. Anything with salt tasted way too salty, anything with more than a trace of sweetener was so sweet i couldn't eat it at all. I ended up losing so much weight I looked like I belonged in a concentration camp. I had no buttocks, no pecs, no thighs and no shoulder muscles. My stomach was caved in and my rib cage stuck out. I wasn't sure if it was a medication I had been put on or something else I had been given in the hospital.

Due to some screw-up at the cardiac surgeons office I ended up overdosing on Coumadin. It got so bad I couldn't walk more than ten feet before collapsing on the floor from weakness. I tried taking a sit down shower and ended up breathing like a fifteen year old horse after running the derby. I finally asked my wife to call 911 because I thought I was going to die soon. They got me to the hospital where they did some testing and told me my I/R went past the test limits of greater than 10.8 (my target was 2.5 to 3.5) and that my heart had bled out. They did emergency surgery putting in a pericardial window and pulled two liters of blood from my pericardial sac. "Two liters?" I asked when I awoke, "are you sure?" "Yes" he replied. I was in intensive care for six days afterwards with a drain tube hanging out of my chest that hurt every single time I moved. I also found out later on that my hearts ejection volume had dropped from 55% down to 30%. Don't know if the bleed out damaged my heart but it is a possibility. It still hasn't recovered.

I CAN NOT BE MORE ADAMANT ABOUT THIS POINT. IF YOU HAVE TO TAKE COUMADIN (ALSO KNOWN AS WARFARIN) GET YOUR I/R (BLOOD THICKNESS) CHECKED AT LEAST TWICE A WEEK TO BEGIN WITH AND IF AT ALL POSSIBLE GO TO A COUMADIN CLINIC (I NOW GO TO THE ONE AT MY CARDIOLOGISTS OFFICE). My Coumadin clinic has a nurse who pricks your finger and measures the I/R with a handheld device. Then I see another nurse that looks at my current I/R reading as well as historical readings and adjusts my medication as required. The whole visit takes about five to ten minutes. If I had gone this route initially, my heart would have never bled out. THESE MEDICATIONS REQUIRE CLOSE MONITORING, OTHERWISE YOU ARE PLAYING WITH FIRE. Additionally when they check the I/R with a meter at the Coumadin clinic you avoid the delay (maybe a day or two) of having it sent to a lab and then the time it takes the doctor to get the results and get in touch with you. My I/R level is where it should be now and as you might be able to tell I am most appreciative of the nurses at my Coumadin clinic.

I instead had my I/R checked initially at a local lab and they sent the result to the cardiac surgeons' office (kick me please). The surgeons' office called us and said the I/R was high and we should have it checked again in a week. Must be pretty close to the OK range I thought as there was no mention of medication adjustment or danger. We had it checked again in a week as we were told and they called back. They said the I/R was still high and told me to have it checked again. Well in the mean time I was getting so darn sick and weak I couldn't walk ten feet without dropping to my knees. As I wrote above in the third paragraph the results were disastrous. NO ONE SHOULD HAVE TO GO THROUGH A BLEED OUT OF THE HEART AFTER GOING THROUGH AORTIC ANEURYSM SURGERY.

I went home after eight days and was doing sort of decent when I started experiencing breathing problems. Whenever I tried to lay back in the recliner or lay down in bed I couldn't breathe in enough air. I had to sit straight up in order to breath. Strange since I have very good sized lungs. I didn't know if my heart was going southbound or what. Had to go back into the hospital where they pulled 1400 ml of fluid off one lung sac and 900 off the other. The procedure sounds scary but they were so good at it, all I felt was a little needle prick and a very small brief burning sensation from the lidocaine (pain killer). Then they put the drainage needle in with the guidance of ultrasound and drained off the fluid. Felt like someone was lightly pressing their finger to my lower back. Did the other side the next day. Piece of cake. That took care of the breathing problem almost immediately and I thought I was leaving but then my right arm swelled up like Popeye's' arm (after the spinach). They found I had a blood clot that went from my jugular vein clean down to my elbow in my right arm, courtesy of temporary dialysis lines and picc line I had after the aneurysm surgery. Went home and had to take two weeks of two a day Lovenox (blood thinner) shots in my belly. My wife did an excellent job of administering the shots and the needles are very fine so not really much pain at all. Still couldn't eat squat. Doctors said more or less grin and bear it, it should improve with time. After dropping from 238 before the aneurysm down to 182 lbs my appetite finally turned around slowly. I knew it the time I got up enough nerve to have a Quiznos large Traditional on whole wheat. Ate the whole thing! Now I'm back to 210, not a bad weight for me even though I am 6'4". I am beginning to wonder if the appetite loss was due to morphine withdrawal. I read comments in my hospital records (which I got for free) and they made comments about the large amount of morphine I required. I cringe to think what heroin addicts go through in recovery withdrawal.

I have subsequently developed frozen shoulder on my right side and now it's in my left. That's probably expected after spending the months of October and November in the hospital or at home on my back. For two months after that I was pretty still worrying about my sternum. I guess that may have contributed caused the frozen shoulders. My GP recommended I go to a physical therapist and after seven visits I am making very good progress. I am also starting to lift some light dumbbells (15 and 20 lbs) and that seems to be helping my overall strength and endurance.

Currently I feel I'm about 55% of the way back. I go on two mile walks three days a week and have started doing some puttering in the garage and on the car. It tuckers me out for a half-hour or more afterward though. Strength wise I am about 30% of what I used to be. That's partly because I don't think my heart is up to moderate exercise yet, the meds, plus the fact that I have to get my frozen shoulders completely resolved. I am also cautious about my sternum. I used to do three sets of ten reps at 180 lbs at the machine where you extend your arms straight out and then pull until your hands touch. I wonder if that would crack my sternum now. I'm looking forward to getting back to the gym soon.

I would like to thank a lot of people who helped me out during this ordeal. My wife for getting me to the hospital promptly on two of the three trips (ambulance for the other). To her, my daughter Sam, my son Gabe and the rest of my family for coming to visit me frequently. This includes my brother and sister who live in AZ and two sisters from back east that flew out. And of course the cardiac surgeon and his PA, doctors, nurses, nurse aids, EMTs, therapists, technicians, food servers, and transport personnel at Banner Desert Samaritan here in Arizona. They are the nicest group of people I've ever met, bar none. They made a very difficult situation bearable and without them I wouldn't be alive. Without them I might have ended up with a few screws loose, or perhaps a few additional screws loose.

Some people choose athletes, movie stars, etc as their heroes. I have to say after spending 42 days in the hospital I am very aware who the true heroes are. When it's three in the morning and your aorta has dissected and your life is on the line who are they going call? They're going to call up the surgeon, nurses and anesthesiologist who have dedicated their lives to saving lives. People who work long and often irregular hours under very stressful conditions. People most of whom don't make anywhere near what many professional athletes make. People who get awoken at 4am and have the moxie, training and talent to dive into someone's' chest and save their life. Nurses and doctors who care for people on the brink. Nurses and doctors that have to deal with life and death and still find a way to smile and carry on. Those are the heroes. Make no mistake.

To the people on this forum. Thank you each and every one for telling your story. At first I could hardly read the stories of you and your loved ones. It was just too painful, too scary, too close to home and too soon. But after a while I got braver and began reading more and more and it gave me comfort knowing I can deal with this too. It also confirmed how lucky I was to have survived.

My best to all of you survivors and everyone that helped them survive and all the loved ones of those that survived and those who did not. For those who have lost loved ones all I can say is think of the good times you had with them. Think of the times when the chips were down and you were there for them or they were there for you. That is how I hope people remember me when my time has comes. You have my utmost sympathy and my prayers.

And finally to the late Dr. Bill Maples. Thank you for all of your work on this site. It brought a lot of comfort to many people, both patients and their loved ones. You are sorely missed but fondly remembered.

Discussion, comments, or questions: Robert Wells

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