On May 29th, 1997 my husband decided to have a little rest as he was not feeling "great" within a few minutes he was up complaining of a severe pain in his back. It extended from the shoulder blades into the lower back area. Being a migraine sufferer, he has always been able to control pain, but this time he knew something was dreadfully wrong and within 15 minutes he asked me to take him to the hospital.
Because of his ability to control pain, he was not seen quickly. The emergency department staff received "more needy" patients. Finally he was ushered into an examination room where a battery of tests were performed. He was given Demerol to ease the pain but it didn't have any effect. After a second injection of the same drug, the "on call" doctor decided to call in a specialist. It was decided that he probably had a kidney stone or was having a gall bladder attack as the pain was not centralized. By this time we had been in the emergency department about six to seven hours. He was admitted so further tests could be taken in the morning and at 11:00 p.m. he was settled in his bed.
The next morning I called and he was having tests done, so I continued with my schedule. I played the organ for a funeral then went to the hospital to do my volunteering.. taking baby photos on the third floor. I had picked up some flowers for my husband in the tuck shop and told the nursery staff that I would be back to do the photos in a while. The nursery ward clerk told me that the switchboard had been paging me and I was to call them immediately. The message from switchboard was to go to CCU immediately.
My aged mother was a patient on Continuing Care Unit C so I immediately headed off to that far location of the hospital thinking that she had taken a turn for the worse and was dying. I talked to every staff member asking who called as my mother seemed the same as usual. I called back to the switchboard and asked who wanted to see me in Continuing Care.. She said NO... Cardiac Care Unit.. located one floor below the nursery. This time panic set in.
When I finally was admitted to the floor, a specialist was there to tell me the diagnosis, a thoracic and abdominal aortic dissection, and they were waiting for an ambulance to transport him to a teaching hospital in nearby London Ontario. I spoke with my husband briefly and tried to be upbeat and cheery, but I must admit I wasn't very successful.
Within a half an hour my husband and his nurse were speeding off to another hospital. In London, Rob was fortunate to get (in my opinion) the best doctor in the field. A battery of tests were again taken and he was whisked up to the intensive care unit. During the past 24-48 hours the flap had closed off the blood flow to the right kidney, so he lost the use of it and his blood pressure was going wild. The dissection extended from just below the arch into his right leg. The doctor stated that the aorta had dissected half the circumference, the length of the aorta and only one layer of tissue was containing the blood flow in the false lumen which was open at each end.
Over the next two weeks, they experimented with combinations of drugs to try to stabilize his blood pressure. Before the dissection, he didn't have a blood pressure problem. Some of the drug combinations made him disoriented, and at times he had no idea where he was, and some gave him unbearable headaches. Finally after twelve days, the drugs began to bring the pressure under control and was allowed to get out of bed and sit in a chair, then a short walk was permitted , and on his fifteenth day he was allowed to go home on a two day leave of absence to see how he could manage.
On the third day he was back eager to be released, but very weak. Again a battery of tests were performed and he was discharged on the eighteenth day. Our eldest daughter is an employee at the hospital and spent every coffee and lunch break with us. Her presence and support was wonderful during this very stressful time. The doctor wrote up the order for a nurse to come in daily at first to monitor his blood pressure. We bought a cuff and she helped in teaching us the proper use of it. His blood pressure was to be kept under 130 / 70.
Brenda, our nurse was a great asset during the first few weeks out of the hospital. She was that ever present, cheery, encouraging person that we needed to give us moral support and guidance. A social worker was enlisted to help us adjust to our new life style. An appointment was made with a specialist at the Robarts Research Institute and the doctor recommended diet changes so a dietician was enlisted to help with these concerns. Rob was to have no caffeine, salt, cut meat down to 2 oz every other day or preferably, be on a vegetarian diet. Rob's cholesterol was at 4.9 but the doctor wanted it under 2.5. This would help eliminate any plaque buildup in the arteries. There was very little there, but the doctor wanted it eliminated. He was to limit all activities. He couldn't go for a walk, but he could leisurely stroll short distances. He was not to carry anything over five pounds. He was told to eliminate any physical, mental or emotional stress.
Rob returns to the hospital every three months for a complete check up and a CT scan, and once a year to the research institute. He has a monthly visit to our family doctor to monitor his general health. In September of 97, Rob decided to try to return to work against medical advice. He was a commissioned sales manager, and needed to see if he could manage. Well he did until May of 1998, when he applied for a disability pension under the government program. We applied to for coverage under the government drug plan and are pleased that we were accepted by both.
Rob has set up a small work shop in the basement. For very short periods, he can make small wooden toys for our five grandchildren. Watching him make something is like watching a Laurel and Hardy film. I set up the bench, put the wood where it needs to be placed, pick up the saw, he measures it, cuts it (1/2" pine) and then we reverse the procedure. He can't bend over projects for more than about a half an hour as the pain starts up in his back.
Rob takes a pharmacy full of drugs each day and these keep him on the right track medically. He goes out for a stroll three times a week and go to our daughter and son-in-laws for a "float on a noodle" in their pool. He has adjusted to our totally different life style and greets each new day with optimism and enthusiasm. There are times he gets down, but these are usually short lived.
It has been just over two years since the vascular incident. None of the doctors will give a prognosis. It seems to be one of those illnesses that doctors don't know a lot about as there haven't been enough survivors to study.
We would welcome letters from aortic dissection survivors or their families.