Archive for: ‘April 2006’

Brush with Death – Part 5

April 29, 2006 Posted by fairviewsue

More from Evie:

Mom stayed at the hospital, and I don’t remember if your husband did too. Adam and I started looking for a hotel and the first one was full. We found one a few miles away, within view of the major highway. We checked into the cheesy place at 4am. My head continued to hurt. The sheets hurt my head. Adam seemed to sleep. I didn’t.

Light came and we got up and had breakfast. I think we got to the hospital Neuro Intensive Care Unit around 9 or 10, and I think you were still intubated and on the respirator. We could only go in two at a time to your room. You were still heavily sedated I think, so that you would tolerate the tube. I remember seeing the front of your head was bleeding under the bandages and how I was thinking how savage this surgery must’ve been, even worse than open heart surgery because your personality could be damaged.

I looked at all the monitors around you and everything was booping like it should, reassuringly so. At some point they asked us to leave so that they could extubate you.

The waiting room was really a bad trip. Everyone there had a loved one who’d had a car accident or worse. Not that day, but others, people died in your ward and their relatives grieved and called their friends with the bad news. Whole families were there, black and white, all upset. I really don’t remember much that day, as I’d had no sleep and was wondering who you would be when you awoke.

They called us in and you continued to sleep peacefully. At some point you were coming around and they tried to talk to you. “Who are you?” they asked. Without hesitation, “Sue Fairview” you said, just like you say when at work, but a little slower. My heart jumped. I knew I could hear that you were still in there, whole as ever! For the first time, I had hope, and I realized that was only because of the emergency surgery to remove the clot, that you were able to be lucid and better than when your husband last saw you at home. He was so pleased also. But we were reluctant to be ecstatic, because we knew there was a long road ahead.

The nurses, ever the drill sergeants, also asked you to move your fingers and toes and were met with partial success, because you had weakness on your right side and couldn’t move your right hand at all and toes I don’t remember.

The LOML has since told me that he brought me my bronze statuette of the Hindu Deity Ganesh, the destroyer of obstacles, as part of his wish to connect me to the outside world in a constructive and personal way. When he held it up to me I touched it gently with my left hand even though I was semiconscious. (I collect Hindu and Buddhist articles as part of Asian and religious study, decoration and spirituality.)

I guess I was better the next Saturday morning, seeming lucid and able to move my right hand and toes on my right foot. I am told that I recognized my mother and the LOML. My family was encouraged by this result. At this time I told the LOML that I wanted a divorce, which I do not remember doing. He was quite upset that his wife almost died and then told him she wanted a divorce. He was so upset that he told my sister and my surgeon about it. Much later he recounted my request to me. All I could do by way of explanation was tell him of a dream that I had where something very serious was wrong with my brain and I worried that he would no longer want me. I decided to beat him to it by requesting a divorce. This made sense to my sister, Evie. My nursing notes from that day indicate that I was oriented to person and place, but not time, and was generally confused.

Brush with Death – Part 4

April 26, 2006 Posted by fairviewsue

Back to Part 1

On the same day that the LOML found me, April 29, the hospital team commenced the embolization and early on accidentally ruptured a vessel. They managed to stop the bleeding, but the hemorrhage was worsened. By that time my family was there.

My Boss, Dr. M, was worried, telephoned the hospital and spoke to Adam. Adam said that he did not fully understand what was wrong with me, but did AVM mean anything to her. Dr. M responded that it did. Great excuse for missing a review, don’t you think?

Evie has since written to me:

I think I had to wait a while until the woman doctor came out, or until Dr. L came around to explain to me what an AVM is and what had happened to you. Knowing about it did not help me feel better about it. Dr. L was gravely, and I mean, even for Dr. L, gravely concerned. He seemed to be holding back something. But he did share that your prognosis was unknown and that you were very, very ill.

He also explained that the docs would try to stop the bleeding, which in your case had already stopped from a tamponade effect (pressure from the blood already present restricts more bleeding), and prevent more bleeds by injecting glue into suspected spots. I think that’s what they were doing.

I sat in a plastic chair in the hallway with my head hanging down and my elbows on my knees looking at the floor for a few hours. I was the most depressed than I have been in my lifetime, too depressed to cry or talk. I think Adam and Mom were looking at me and trying to fathom where I was. I felt further away from you than I ever have. Mom asked if there was anything at all she could do to help me. I said no.

I don’t remember what the others might have been talking about, except that your husband filled me in on more details of the day and I remember thinking that he would probably start torturing himself about not finding you sooner. He didn’t deserve that torture, but I didn’t know a way to prevent the eventual thoughts he’d have about it.

The doctor came out again around 9pm or so to say that she was sorry, that she had accidentally punctured another small vessel in your brain trying to get into a tight spot. I tried to stay in my calculating brain understanding what she was saying, as if that ability would be crucial to your survival. I thought she was quite candid about it. So, she said you were being prepped for emergency brain surgery. I just didn’t know what to make of this, but I knew that emergency surgery was never a first choice.

She said there was a chance that we’d be able to see you before surgery and we all went running around the halls to see if we could. I so much wanted to see you and wondered if it would be my last chance to see you alive. I think part of me didn’t want to see you because it would be even more real and upsetting, as if there could be more upsetting. I never did get to see you then.

Dr. W came out and introduced himself and I liked him immediately. He exuded intelligence, warmth and professionalism. He explained your situation, without any trace of condescension, and seemed positive he could really help you. He told us about creating a little window in your skull through which he could work. That’s when I asked if he’d make your skin incision, which I knew would be pretty much from ear to ear, well behind your hairline so the scars wouldn’t show, and he said he would. He wouldn’t give you a prognosis until he got into your brain, but he was pretty positive and highlighted the potential benefit of draining your clot right away to relieve the pressure.

He looked at me probingly and asked if I was your identical twin. Then he said that when things calmed down, I really should have a MRI to rule out AVM in me. A twinge of anxiety flew through me. Then I felt guilty about thinking about myself. (Evie’s MRI was performed later and was normal.) Then I went back to affect-less depression. So Dr. W said the surgery would take about 6 hours and we could all go to a family lounge upstairs to wait.

The lounge was typical, large, no food to be had anywhere, vinyl upholstered furniture and glaring lights. Mom was talking as if to save her life. I think if she stopped talking, she would be having thoughts she couldn’t deal with. About how recently she’d been so angry with you that she had dipped into actual hostility. About how she must now feel guilty about this hostility, that perhaps she was in someway was responsible for your present condition. I just couldn’t listen to her, or your husband, gamely trying to entertain her.

Adam found a little room off the lounge, same cold, sticky furniture, but dark and somewhat muffling of Mom’s prattle. My head hurt so much with worry, I covered myself with my coat, closed my eyes and just though of all the what ifs and how I would deal with them. Mostly I wanted time to pass. It passed slowly.

Around 3am, Dr. W came into the lounge and said your surgery had been a success. He seemed fresh as a daisy, and perhaps on an adrenaline high. He said we’d know more when you woke up the next day, and that we all should try to get some sleep and come back later. Again, he had no prognosis for you, but it seemed to me that you were definitely going to live.

Dr. W had gotten a peek at the AVM and called it ‘formidable’ in size.

Brush with Death – Part 3

April 24, 2006 Posted by fairviewsue

Diagnosis and Treatment Plan:

The LOML and Dr. L met with Dr. W, my attending neurovascular surgeon. Dr. A, my world renowned primary neurovascular surgeon, was away on sabbatical, but would return for my surgery.

Dr. W told the LOML that an angiogram revealed that the hemorrhage was due to a ruptured artero-venous malformation, or AVM (see picture of your blogger’s brain) in the left frontal-temporal lobe of the brain.

Background: An AVM is a twisted knot of larger than usual arteries and veins that tend to rupture easily as a person ages and the malformation itself is congenital. As a person ages, the walls of the tiny vessels continue to thin and eventually the AVM is destined to rupture. Contributing factors to the rupture can be high blood pressure and sometimes childbearing. AVM is usually misdiagnosed and found only after a bleed. When actually diagnosed, the patient typically complains of a severe headache and the AVM is then detected by CT scan (computerized tomographic scan) or MRI (magnetic resonance imaging). Treatment plans remain the same in either scenario.

The treatment plan was first to embolize the AVM, which means that glue is gently squirted into it from a catheter, as much as possible, to stabilize it and prevent further bleeding. The second step is to surgically remove as much as possible of the stabilized AVM. The angiogram guided embolization was to take place that afternoon.

The LOML telephoned the insurance company. Now, that is presence of mind!

At some point in the day, our friend Dr. L called his wife, Dr. B, an immunologist. I have known her since 1984, when I worked as safety coordinator and radiation safety officer and she was on my radiation safety committee. Because of her intelligence, diplomacy and sweetness, she was a role model for me and we became close friends in no time. She introduced me to her husband, who I was later to work with in oncology. The four of us became fast friends early on. She set out for the hospital right away to offer her support to the LOML and her husband, and to be with me. The LOML remembers Dr. B speaking with Evie during the day.

Dr. L also telephoned Dr. R, an oncologist, vice president, and ex-boss to both Dr. L and me at work, and let him know what was going on with me and that I was in the hospital. Dr. R and I had worked closely together for about 7 years (up until a year before all of this) on many clinical projects to get drug agents approved for both oncology and AIDS indications. Most of the projects were quite challenging for me and together we achieved drug approvals of importance for patients. We made quite a team. Working with Dr. R changed my life profoundly for the better.

Afterwards, Dr. R communicated my medical status to the entire Oncology Department whom I had formerly worked closely with. We were all a very tightly knit bunch. When my friend Kelli came in to work there later that morning, Lucy, Dr. R’s assistant, told her that I was at the university hospital with a brain hemorrhage. Kelli did not believe her as she had spoken with me just the night before. That weekend Kelli determinedly dug her fish pond by hand.

Brush with Death – Part 2

April 20, 2006 Posted by fairviewsue

Back to Part 1

Next, the LOML called my family from the university hospital. He called my twin, Evie. Here is what she later wrote to me about his call:

I was sitting in my office at work, meeting with my favorite engineers, Jason and Lillian. I think it was about early afternoon when I got a phone call from my brother-in-law. “Why would you be calling me at work?” And then he told me that you’d had a brain bleed, and were unconscious and unresponsive, at a university hospital.

I was incredulous. “Please tell me you’re joking” I begged. He said tersely that he would not joke about such a thing. I asked for more details, but beyond telling me he’d found you that morning and asking me to come, I didn’t get more details.

I had started crying at some point, and Lillian and Jason had crept from my office and closed the door. I got off the phone with my head spinning and tears dripping. My head was in some nightmare headache place it had never been before. I thought to call Adam, but knew that he had just left for the airport for some trip or other. I called home and told Erin, our au pair, what happened and that I was going to stop at home and get some things and then go on to the hospital.

I packed up and left the office, steeling myself to make it past the curious, worried faces with a short explanation and saying no to offers to drive me home. In my car, I tried to focus on driving and not the spinning worries about you, whether you’d live or die or be a vegetable. I sure hoped that your husband had blown this all out of proportion.

In my car, I got a call from Adam, my husband, who told me that Erin had had the presence of mind to call him on his cell phone, and that he’d turned right around and was heading home to meet me. I was relieved at least not to have to drive up to the hospital by myself as I’d been planning. I don’t know how I got home.

Once at home, I saw that Adam had already packed an overnight bag for me, something that wasn’t in my head at that time. My head was still in the nightmare headache place. I found the few items he’d not included (wrong inhalers) we got in the car and left. I think we told my daughter we were going up to see you and that you were ill. Sensing the exigency of our departure, she wrinkled her forehead, “just how sick is Aunt Susie?” We mumbled something that she probably didn’t believe anyway.

I don’t remember the drive, just being so grateful that Adam was there and that I remembered how to get to the university hospital from working in that area before. I don’t remember what time it was, but I think it was early evening when I got to the hospital. Your husband was there and I think Mom was there already too. Hugs all around. You were in the neural intervention lab, with a woman doctor trying to fix the bleed.

The LOML called my brother. My brother told me that he cried the whole way up to see me since he just wasn’t ready to lose his little sister.

Then, the LOML called my Mom. My Mom asked if she really needed to come right away. The LOML thought about it and that’s when the seriousness of the situation really hit him. I COULD DIE AT ANY TIME. He replied that yes, she should come right away.

Brush with Death – Part 1

April 18, 2006 Posted by fairviewsue

On April 28, 1999 I was in New York City giving clinical working group training on clinical development to my colleagues from two states via a power point presentation. It went exceptionally well.

On the train back to our home towns, I sat with a new friend, Kelli, and we discussed how she could easily build a koi pond in her back yard. She was very excited at how easy it could be and all in all it was a very pleasant and distracting conversation. She later told me that I had complained of a headache on the train ride home.

I drove home from the station and came into the house at around 9:30 PM exhausted from the long day. I just stood in the doorway dazed with my coat on and the LOML [love of my life] looked concerned and took my coat. He led me into the house and had me sit down at the kitchen table. I told him that I was worried about my annual review the next day. My boss, Dr. M, a cardiologist, was very critical and would never cut me a break; there was just no winning with her. I had worked so hard this past year, well beyond expectations, and I would never be rewarded for any of it. He tried to soothe me and speak rationally, but to no avail. I was bordering on panic. I felt trapped and my head was pounding. I told him I really didn’’t feel well at all, and I would go to bed in the spare room, hoping to feel better in the morning.

So up the stairs I went. During the night I felt nauseous. I dreamt that I was throwing up and having diarrhea and had stripped naked and was freezing cold on the floor. Should I call for help? But, I didn’’t, because I figured that one couldn’’t die from throwing up.

Everything from this point on I only know because the LOML, and others have told me. I was out of it and don’’t remember anything that happened for a good week and a half.

The LOML was awakened by his alarm on the morning of April 29. He got up and went in to make sure that I had gotten up for my review that morning. He entered the spare room and was horrified by what he saw. There I lay, naked, shivering, the bed stripped, bed clothes on the floor, they were covered in vomit, urine and diarrhea. I was semi-comatose. I was unresponsive and could not walk well. He carried me to our bed and put me under the covers.

Then the phone rang, it was my secretary from work. She said that I was expected soon for my review. The LOML answered that we had a medical emergency that we needed to see a doctor about right away and he would stay in touch when possible.

Then he dressed me and carried me to the car, straining his back, and took me to our doctor’’s office. Once there, the doctor lifted my head which made me grimace and called the ambulance immediately. The ambulance sped me away to a nearby emergency clinic.

There a CT scan was performed on my brain that revealed a huge brain hemorrhage in my left frontal temporal lobe. The ER doctor met with the LOML and asked where he wanted me taken and the LOML insisted that I be taken to a large university hospital that we had both previously agreed upon. At that point the LOML made a call to an oncologist we both know and are friends with, Dr. L, who I used to work with and that time worked at the university hospital, to appraise him of the situation. The LOML also called my secretary to update them that I was going to the hospital.

The LifeStar air ambulance was summoned and on its arrival I was loaded aboard, the LOML came along and we flew to the university hospital. Wish I had been conscious, I just love helicopter rides.

Once at the hospital, I was off loaded and the LOML met up with Dr. L. Medical personnel were busying themselves. Then, the director of Oncology Neurosurgery walked in to make sure I was getting the best care and everybody snapped to and started bustling. It’’s not what you know, it’’s who you know. Too be continued…