Personal Stories: Margie Arelline

Thanks, Brian, for starting this website. It is nice to know that there are other folks out there with this problem. No one I know had ever heard of an aortic dissection before.

I have always been a fairly healthy person, tall, thin and active. I’ve had high blood pressure for a few years, but took medication to control it, and other than some ‘old age’ aches & pains, could do anything and everything until………………….

On Sat, May 29, 2005, my husband, Jim, and I were sitting on the couch eating pizza and watching TV. Suddenly, without warning, I had a terrible pain in my lower back and side that started from the right side of the spinal column, into the kidney, around my side into the hipbone. It felt like my side had compressed to a two-inch width. I equated the feeling to the contractions of childbirth – only much worse! I had worked in the garden that day, and thought I had a back spasm.

The pain was excruciating, and I could not get relief in any position. I tried everything. It went on & on for about 1.5 hours, then started to subside, until, finally, it was gone. It never occurred to me to go to the hospital, as I usually work through these little inconveniences with an Advil or IBUPROFEN.

The next day, I told family members about the awful back spasm I had, and that I had better not be lifting heavy bags of dirt, etc. when gardening.

I wasn’t working that week, and took it easy. I seemed to have a ‘tenderness’ in my kidney area, but by Friday, June 4th, I decided that I had better get some yard-work done. So I started weeding about noon, and had just finished one side of the yard when the pain was back! It actually knocked me to the ground. I pulled off my gardening gloves, and made my way to the house, walking, falling, crawling. My very logical mind told me that the pain would last for about 1.5 hours as it did on Saturday, and I could last for that long. It was 2PM and Jim would be home from work at 4:30PM.

By the time Jim arrived, I met him at the door saying, “Take me to the hospital!” We drove to the local hospital (about 10 miles), then waited in the emergency room for another 2 hours while the staff took care of an ‘emergency’. During that time, the pain did not lessen, and I vomited twice in the restroom. I was at the point that I was ready to die to get rid of the pain.

They finally called my name, and the doctor? intern? on duty diagnosed me as having a kidney stone. I was then taken for a CT Scan to determine the size of the stone in order to decide on how to treat it.

Well, surprise, surprise, there was no kidney stone. The next thing I knew they were taking me for an ultrasound. I saw the technician typing ‘ Right kidney, Lower aorta, Upper aorta’, etc. I still didn’t know what was going on.

Various doctors and nurses were showing up and looking at me, my blood pressure, my chart, and talking among themselves. By this time, Jim had called my children to the hospital. They stared at me with frightened faces. The painkillers were kicking in, and as far as I was concerned, I was fine, and it was time to go home. Then a surgeon stood at the foot of my bed, and told Jim & me that they couldn’t handle my condition there, and I would have to go to ECMC in Buffalo for surgery. I remember looking at him, and telling him I would not have surgery. (They said they would ignore anything I said because of the morphine, that I couldn’t make that decision.) Jim offered to drive me -- they said no, ambulance? NO! – there wasn’t time. So the next thing I knew I was on a Mercy Flight helicopter on my way to Buffalo.

Dr. Dashkoff, the cardiologist, and the surgeon were there when I arrived, having a disagreement about my condition. The surgeon wanted to do the surgery which, I was told, was to replace the aorta, then reconnect all of my major organs. (Jim told me later that they said I had a 50/50 chance of survival.) Dr. Dashkoff didn’t think it was necessary. An angiogram at 3AM proved him right.

From there, I spent 13 days in the CCU at ECMC. During the first few days, there were many scares. They said my condition was ‘grave’, my kidneys were failing and they wanted to start dialysis, my intestines were ‘rotting’ and they inserted a nasty tube down my nose into my stomach to remove anything in there. The tube was taped to my oxygen mask. That was fun (not!). Well, I guess things progressed satisfactorily because I didn’t have kidney dialysis, nor the operation to remove part of my intestines. I was getting better.

I don’t remember a lot of my time in CCU. They kept me drugged on painkillers (percoset with morphine chasers), and many, many pills to keep the blood pressure down. I was moved to a regular room on June 17th where I had my first shower in two(2) weeks – yeah! I was sent home with an oxygen tank and 10 prescriptions on June 21st.

The worst set in after getting home. It turns out that I was over-medicated. Therefore, I could barely get out of bed. I was constantly nauseous, and couldn’t eat. This went on for almost three(3) weeks until the cardiologist changed my medications.

So by mid-July, when I started feeling better, started eating, and wanted to become human again, my muscles had atrophied. I couldn’t do anything without tremendous effort and pain. My hands hurt when I tried to write, my arms hurt when I tried to wash dishes, my legs hurt climbing stairs, and my back ached almost non-stop. I remember crying on the basement floor trying to get the laundry from the washer to dryer. Each time I finished the smallest of tasks, I would have to lie down and nap. I really don’t know if that was from the dissection or from the muscle strain of trying to do anything.

Day by day, I started to get stronger and was able to stay up for longer periods of time. I managed to get through Christmas shopping and decorating, and even hosted Christmas dinner at my house. It was quite exhausting, but I made it.

After Christmas 2004, I had a follow-up CT Scan, which showed my aorta was 75% healed. I guess that was good news, although it unnerved me thinking that I wasn’t completely healed. Dr. Dashkoff said I was doing well, but no sit-ups, just walking for exercise. He kept me on six different prescriptions (blood pressure, heart, beta-blockers, etc.) He also gave me permission to return to work in January 2005 – only if I kept the blood pressure under control. It was quite exhausting at first, but my stamina seems to improve every week.

Overall, this has been a very strange experience to me. I was always independent with the ‘I can do it myself’ attitude. I have had to learn to depend more on the people around me, and to ‘baby’ myself more than I did. I have gone through being very elated to be alive, to very depressed thinking it will happen again -- that I may die any minute -- to a sort of plateau where I’ve accepted the situation. What will be, will be. I don’t want that awful pain again, nor go to the hospital for weeks, nor to put my family through the anguish they lived, but life isn’t much fun if we waste today worrying about tomorrow -- when all we have is today and only God knows the outcome.

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