Ruptured Aortic Aneurysm - Six Months Later

Established April 15, 1995
University of West Georgia Disclaimer

It's been three years this month (5/98) since my aneurysm experience; rough years because of other health problems not related to the aneurysm. However, I feel great now. After 35 years as a trainer with Xerox, I took early retirement the end of February. Now I have the time to work on my 93 year old house near downtown Indianapolis, read, cook - relax! I've been happily divorced for 35 years, have a wonderful son, Chuck, who's now 38, and 4 cats and a black toy poodle named Buddy. When I feel too happy, I work on computerizing records for my veterinarian in exchange for cat food. What a life!

Ruptured Aortic Aneurysm - Six Months Later

22 November 1995

I awoke early May 25th with a severe pain in the waist area of my left side. I am a trainer for a large corporation and it was a workday, but I had a funeral to attend that morning. After that, I'd intended to follow up on some customers I'd trained the past week, but the pain was so distressing, I drove home, put on some really scrounge clothes, ingested some Excedrin and "took to my bed". The pain was so unbearable by noon, I drove to my doctor (of 34 years) without an appointment. He thought I might have a kidney infection (never have had one) or diverticulitis (never had that) and prescribed an antibiotic, antispasmodic and antipain (Tyelonol 3), which I drove to have filled, waited a long time for; finally got back home and took all of these things with a great feeling of relief, knowing all would be well - at least, the pain would subside. I had, in my own mind, performed miraculous feats by "acting normal" during my activities of this day. By then, it was 3:30 p.m. - the pain had been the focus of my existence for almost 10 hours.

By 7:00 p.m. I felt worse than when I gave birth to my son, Chuck waaay back in 1959; this was just a pain in my waist, for goodness sake! I called my family doctor and he was home. I told him the pain was more intense - didn't move, or throb - just was there, heavier and heavier. He told me to go to the E.R. My friend of many years and neighbor for 2 years, Christine Rice, was home when I phoned and was happy to transport me to the E.R.

The triage system at Community East Hospital here in Indianapolis works well.I approached the desk nurse, begged her to help me, because I knew I was dying - then vomited: just water; but, goodness! How impressive...

I was in a cubicle in E.R very soon after the triage nurse took my blood pressure and determined I really had a problem. I was questioned by numerous people about my medical history, which is lengthy; subjected to an invasive occult blood test no really big deal - except, it's embarrassing, - and questioned at length about every aspect of my life - by each intern, resident, doctor and janitor there that evening.

I'd left a note for my son that I was going to E.R., so by the time the cubicle interrogation was under way, Chuck and our house guest for the 500 Mile Race, Robert, were with me. I had been given some kind of mild pain medication soon after arriving in my cubicle. After my son and Robert arrived, I think I had some morphine but I really don't know, because the pain never let up. I was exhausted . I remember hearing that I was being admitted to the hospital I remember Robert angrily saying "She's admitted at 10:30 p.m., it's now 1:00 a.m. - why isn't she in a room?"

The next thing I remember is trying to appear perky and funny, while I had a sonogram early the next morning. I had to urinate, so asked the person administering the test if I could please do that. She looked "abashed", as they say in English novels, said she'd be right back. I did get to go - then was told I needed a Cat Scan. I'm allergic to iodine contrast dye; anaphylaxis is not just a word in the dictionary to me, so I was concerned - until they said it would be dry (without contrast dye). After that test, a very handsome man I'd never seen came to my gurneyside and asked if I knew what an aneurysm was. "Of course," I said. Then, I realized I'd forgotten, essentially, everything I had learned. I said "What do you mean - is this a test - I fail - what do you mean?". All of the medical knowledge I'd gained from television and novels - even medical books, had seeped from my brain. I felt completely ignorant and bereft of everything medical I'd learned from reading.

Russell Dilley, the very handsome man I'd never seen, was the vascular surgeon who told me that I had a very large aortic aneurysm and surgery should be performed "posthaste" to prevent untimely death. I'm not in favor of "untimely death."

Of course,I agree - I still have the pain; after 30 hours. Never did it lessen, or move from my left waist area. My family and friends are already there when I receive this information - yet, I feel I have to call my office. So, they let me.

Russell Dilley spent 3 hours repairing my ruptured aortic aneurysm, using 5 inches of Dacron tubing. During this process, he later told me, most of my abdominal organs were moved around, my kidneys were clamped off, much muscular pain would result from this. It has. Right now, I have pain a little pain near my 12 inch long incision but, it's still pain. I'm glad I'm here to feel it and complain about it.

While being prepped for surgery, my right lung was inadvertently collapsed during the placement of a SwannGanz catheter, requiring the insertion of a chest tube. The Critical Care doctor on staff told me the pain would be excruciating . I've seen this procedure on E.R. lots of times - nobody ever complained. How bad could it be? Silly me! Those actors on E.R. were always acting UNCONSCIOUS! I was quite awake, unsedated, untranquilized. The pain was indescribable for 20 seconds. Imagine a duel with an adversary , who hates you, and a sword is shoved into your chest you just lost the dual. Well, my doctor didn't hate me - he was trying to keep me alive for an operation to keep me alive; which might not even do the trick. The most incredible nurse, Alice Summerman, held onto my hand during the entire procedure, never indicating that I might be hurting her. I'm sure I did.

The operation to repair my aortic artery took 3 hours. I spent almost 5 days in ICU; about half of them on a demerol pump, which was wonderful. After being on the demerol pump for about 2 days, I noticed many interesting scenarios occurring outside of my room. The entire area was enclosed by windows, so I saw and heard when a large group of Latvians gathered in the area near the nurses station, with balloons and a cake, preparing to have a birthday party. They had to be the family of my friend, Laima, who is Latvian. I heard Laima's voice, but could not see her. The party disappeared down a hallway, but the merrymaking continued. Then Laima's brother was brought in with a heart attack, from which he expired, and a casket company truck backed up to the 3rd floor doorway to take him away. I continued hearing the voices of my friends, Robert and Laima, arguing vehemently, but could not see them. Red cursive handwriting appeared on my walls, and I became frustrated because the words changed so fast, I couldn't read them, and I knew I was missing some very important messages. No one noticed that I seemed slightly goofy, until I accused my new night nurse of really being my friend, Lamia, just pretending to be a nurse so she could do me in while fiddling with my IV's. Then they took away my demerol pump and some other pain medication was provided, but things didn't seem quite so interesting anymore. Of course, none of those things happened - Laima's brother is alive and well. But I really saw and heard everything I related.

After 5 days, I was moved to a regular room and in 4 more days was allowed to come home. The transition from ICU, where my every need was taken care of, to a regular room, where I received very little attention, was an abrupt and difficult change. It did force me to stop lolling about and move around a bit, which is necessary to the healing process. But there was an obvious lack of nurses on my floor and, though kind and considerate, they had no time for other than just cursory attention.

I saw my surgeon 3 days after my release to have the 33 giant staples removed - which also hurt a lot - and he said I would be tired for a long time . He was right. I still am.

I returned to work after 3 months. I drive sometimes as much as 4 hours a day and stand up to 6 hours a day. But now, after almost 6 months, I feel more positive in my attitude, my incision doesn't bother me as much as it did last week - things just don't seem as bleak as they sometimes did up to about a month ago. I am far more selfindulgent than I used to be - I sleep a lot more and don't get into a cleaning frenzy every weekend - or every month, for that matter.

I have nothing but compliments and gratitude for those who took care of me. Though the reputation and skill of my surgeon might warrant arrogance, he was always respectful and kind. When I asked him if my lifestyle (smoking, stress, etc.) had contributed to the aortic rupture, he said no - it was because of a weak place in the wall of the artery, which could have always been there. Smoking doesn't help anyone, however. And I stopped - for awhile. Now, I punch holes in the filters to decrease the poisons, as I work on stopping again. I know, it sounds lame.

I bought a manual treadmill, because walking in my neighborhood isn't a good idea. I use it sometimes. I plan to use it more. I know.

My greatest frustration was trying to deal with mistakes made by my medical insurance company, billings from providers which exceeded "usual and accepted" fee ranges, leaving me in debt: and seeing to it that my pay was continued and correct because my job position was changed from nonexempt to exempt while I was on disability. Those hassles are things no one recovering from major surgery should have to deal with.

In the past, I've experienced physical situations which, upon medical examination, showed nothing abnormal. I have high blood pressure controlled by Tenorman; arterial spasms controlled by Norvasc twice a day; Glaucoma (in my right eye - so far) seemingly corrected by an operation 6 years ago called a trabeculectomy and iridectomy, which resulted in a large bleb (blisterlooking thing) over my iris to better channel the aqueous fluid; and ongoing (for 3 years) colonoscopies for removal of polyps - because one last year was precancerous.

I've been treated by my family doctor as an intelligent woman who knows when things are not quite right - but not so often by the specialists to whom I've been referred over the years.

My message to people who might relate to the attitude that your doctor may convey to you that it's all in your mind change your job get a boyfriend change your attitude grow up! is, never ignore your pain. Physical pain, particularly. I might have, if my family doctor hadn't been home to tell me to go to the E.R. I've been treated in the past, so often, as hypochondriacal, that I've been reluctant to even complain about anything. I might have just taken 4 or 5 Tylenol 3's and gone to sleep and bled to death. If you hurt, don't stop trying to get help.

I know I'm very lucky to be here. I feel there must be some task to accomplish, now. I hope to discover what it is.

Update: 15 October 2005

It's been awhile since I had anything to update until I found out in January that I have a new aneurysm.

After my AAA in May of 1995, I developed asthmatic bronchitis in 1996, which has become Chronic Obstructive Pulmonary Disease and I use oxygen. Then in 1997 I had an attack of acute pancreatitis and was hospitalized for 3 weeks, then developed pseudocysts which required percutaneous drainage 3 times and ultimately 2 major surgeries one in 1997 and the other in 2000. As a result of the severity of the pancreas attack, that organ has a lot of calcification now, so I have chronic pancreatitis, as well as type 2 diabetes because of the calcification. At one point, I weighed 106 lbs. and I thought that was wonderful...until I saw a picture. I'm now a chubbier 66.7 year old woman, weighing 127 lbs. and holding.

I had a CT Scan for my pancreas situation in 2001, because I'd had a more serious bout with pseudocysts covering both the head and tail, which required a surgery attaching part of my small intestine directly to the pancreas to prevent any more of those from occurring the CT Scan was to see how that was working out. Evidently, the radiologist reading the scan saw a small aneurysm in my descending thoracic aorta, but didn't mention it at the time...to me, at least. This past January, I had another CTscan of the intestinal tract and was told that the aneurysm had grown to 4.3 x 3.7 cm. and I should probably "see about it".

My abdominal aortic aneurysm surgeon refers thoracic aneurysms to John Fahrenbacher, an expert in heart/lung transplants and my new problem. He is with Methodist Hospital, part of the Clarian Health System in Indianapolis and has a prestigious reputation. His practice is called Corvasc, a part of the Methodist Hospital campus. Since my previous aneurysm surgeon, Russell Dilley, doesn't even take a look at these thoracic dudes, that leads me to believe that a far more serious and complex fix will be involved.

Dr. Fahrenbacher saw me on February 9th and wanted me to have another CT Scan showing more of the upper aorta to be sure there was nothing more higher up ready to burst forth. There wasn't, so I'm to have CT Scans yearly to watch the growth, because nothing is done until the size reaches 6 cm.

I asked about the stent procedure I've been reading about more and more on our support site and he said that perhaps that might be an option. If it isn't, this surgery sounds absolutely horrendous. Of course, the chance exists that growth of the new aneurysm will be slow or nonexistent, which would be lovely.

After I have my 1st yearly CT Scan check for growth of this new aneurysm, I'll send another update. If any of you have experienced a descending thoracic aneurysm 10 years after an abdominal aortic aneurysm which had ruptured slow leak type of rupture, as mine was in 1995, I'd like to hear from you. Most of the time now, I don't even think about it, but during the times that I do...I don't feel very optimistic.

I'd hoped when I finally sent an update, it would be to report that a miraculous agereversal had occurred, and I had won the lottery and my 100 year old house is paid for and belongs to ME! Well, my house was paid off August 1st. Hooray!

My best wishes to all the fine people in this group.

Update: 2 May 2007

I promised to send an update after last year's cat-scan of my descending thoracic aneurysm and I realize I didn't do that. There had been no discernable change. I saw Dr. Fehrenbacher's Physician Assistant, Leah Fehrenbacher (no relation to the doctor) then and after this year's scan, which was last Wednesday, I was to see Dr. Fehrenbacher. Unfortunately, he'd been called to do a lung transplant, so I again saw Leah, his assistant.

Leah and another doctor in the practice both examined the scan and didn't believe it had grown - in fact, she thought it looked a tad smaller than the 4.8 cm. of a year ago. So I asked her what size it needed to be to surgically repair it - I'd been thinking 6 cm. I am wrong - Leah said 5 cm. She also told me that Dr. Fehrenbacher had been involved in a series of trials using an endovascular approach to repair descending aneurysms during the past year or so and maybe this could be done with me, when the time came. I asked how it was done, and she told me that both femoral arteries were incised and the graft was positioned using a balloon-type thingy.

I discovered, however, that contrast dye also must be used to visualize the procedure and, since I'm allergic to the point of anaphalactic shock to the iodine contrast dye, I guess this wouldn't be a possibility for me. I find it hard to believe that no one has developed a contrast medium for arterial visualization that doesn't contain iodine - I'm sure I'm just one of thousands of people who are allergic to this stuff.

Endovascular would be so much less dangerous a procedure than the surgical, in which there is a possibility of paralysis, stroke and death. Anyway, I thought I don't need to worry about all that yet....until Saturday, when Leah called me to say she finally got the doctor to look at my scan. He says it HAS grown - to 5 cm. But he doesn't want another cat-scan until next year. I immediately Googled descending thoracic aneurysm and found that 5.5 cm. is the size at which surgery would be required. If it were ascending, or in the arch, then it would be at 4.8 or 4.9 cm. So I didn't call Leah back, all in a tizzy - as I would have done if Google had said 5 cm. I'm happy to wait until next year.

If any of you have heard about an option to iodine contrast dye, though, I would love to hear all about it, who makes it and how to get it. If not, how about someone working on producing that for me? I'd be ever so grateful! Seriously, any information anyone has would be most appreciated. Best wishes to all.

Discussion, comments, or questions: Judith Ramsey

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