Back to the beginning

It all started, I believe on Monday night. Kim called me on the phone, very upset. Her ex-husband (divorced less than 3 months ago) had sent her an email in response to one from her, saying that to be brutally truthful, he didn't want to hear from her ever again. She was extremely hurt. Up till then they had been able to have civil conversations -- they had mutual friends and enjoyed mutual night spots for karaoke several nights a week. He and his girlfriend of several months (Kim and he had separated ten months before) had just gotten back from a trip to Las Vegas; until that time, he and Kim had frequent conversations, emails, and IMings back and forth. Kim was devestated and in tears when she called me, saying she never wanted to hear his name again. I told her with motherly sympathy that he had obviously moved on and she should do the same; her life was full of new beginnings and she had to start looking for them and put the past behind her. It never occurred to me that this event would make her blood pressure reach the point of boiling, but apparently it did.

The next morning I got a call around 10:00 from Kim's girlfriend Brandy -- "Don't want to alarm you, but Kim's been having trouble speaking and has tingling all down her left side -- what should I do?" I told her to get her to the hospital, and I'd meet them there.

It took me a half hour to do that, and when I got into the ER front desk, there in the queue was Kim sitting in a wheelchair, Brandy and their friend Meghan by her side. Kim was very upset, crying and asking me what had happened to her. She didn't call me "Mom"; she called me "Red", which is the color of my hair. I told her we were at the right place to find out. I asked what all had happened, and she told me, in her own brain-affected language, that she had a really bad headache the night before and didn't really sleep. Early Tuesday morning she got up and tried to take an Advil, but couldn't hold onto the bottle and the tablets spilled to the floor. She felt so bad she just went back to bed without taking anything. A while later she got up again, this time thinking maybe some Nyquil would make her feel better. Again, when she tried to hold the bottle, it fell from her hands and spilled on the floor. At that point she woke up Brandy, and the phone call happened. This tale was repeated several times over the day, from the sign-in desk, triage area, and her treatment room. Her blood pressure was 197 over 163. She couldn't remember my phone number, ANY numbers, any names. Brandy had become "Tires" (she worked for a tire distributor); I was "Red" for my hair color; my husband and Kim's Dad Bucky had become "Puppy", Her oldest brother TJ, a college professor about to earn his Ph.D, was now "Smart", his wife Gail was now "Accent" (she was raised in England and has a British accent), her sister Wendy, a run-away at 15 now reunited with our family was now "Found"; Cory, her local sister who seems to think she is always right, was now "Right"; her husband Brian, who is working his way up the banking business ladder and putting in long days, became "Work". Cory and Brian's sweet babies, Addie, 3, was now "Goldilocks", and Ben, 19 months, was "Little Red" (he has my red hair). Kim's youngest brother, Matt, who is currently distant from the family, had become "Lost". As Kim tried to remember anyone, she could only find a single descriptor for that person and could not find the name in her memory. It was bizarre. We found ourselves playing charades in the ER room, trying to figure out who she was talking about based on the adjectives she called them by. I wondered to myself if this was real -- it seemed almost like a BBC spoof. We actually laughed quite a bit over the entire scene.

As much as we laughed, we cried as well. When she tried to speak of Wendy, "Found", and Matthew, "Lost", she cried, I cried, Brandy cried. In her broken language, she saw my tears and told me "POTS, Red!" She told me Found loves me, Lost loves me, and they know I love them. She kept saying Lost made big mistakes. And she told me how he used to crawl in bed with her at night when he was little, because he was scared. He was very scared. At one point she told him he couldn't crawl in bed with her any more, and she found him asleep outside her bedroom door. Again, the tears fell. We could have washed the floor, there were so many. Again she looked at me and said "POTS, Red!" POTS? Hanging on the wall hear her bed in the ER, there was a red stop sign that reminded the staff to check the patient's ID bracelet before they administered any treatment. She now read it as POTS. Her brain had reversed the letters. Stop was now POTS. Stop crying, Mom.

No one at the ER seemed very concerned about her, though she did have on a heart monitor, blood pressure cuff, and a pulse oxygen clip. After we were there several hours, a doctor came in, then another, then another as the shifts changed. Each doctor did the standard neurological tests -- squeeze my hand as tight as you can, can you feel me tickle your foot?; try to keep me from pushing your hands/arms/legs back. Each of them asked the same questions about what had happened -- she constantly complained that her left side was "burning" -- she kept saying "burns, burns" whenever anyone or anything touched her left side. Otherwise, she couldn't feel anything on her left side, but could still move all her left-sided extremities. Intermittently she seemed to be able to speak in coherent sentences; then suddenly she would go back to single words, tears, and asking what happened to her. Kim has had migraines off and on for the past ten years or so; the preliminary belief was that she had had an unusually bad migraine, though she had no warning aura or other warning signs that one was coming.

My husband had been out to lunch with some fellow pensioners that day, and I left him a note telling him I thought Kim had had a stroke and he should come to the hospital as soon as he read the note. All the while at the hospital Kim kept asking, "Where's Puppy? He'll understand." Somehow her mind allowed her to remember that nearly a year ago her dad had been admitted to the stroke unit for what we thought was a stroke, and she knew he would know what she was going through, since she couldn't explain it herself. Finally around 2 p.m. Bucky arrived and she cried as he hugged her, and she kept saying, "My Puppy, my Puppy".

Somewhere in the course of the day a CAT scan was ordered and it was done quickly. An MRI was ordered and this showed something going on on the right side of her brain. They were going to admit her -- they thought she had had a stroke. A young woman in good health with no warning. Her blood pressure had come down to reasonable levels in the ER and no other symptoms manifested.

Brandy stayed with her till she was assigned a room on the fifth floor -- general medical issues floor. The next day another MRI on the carotid artery area showed the source of the stroke. She had a congenital defect in her carotid artery that had allowed a blood clot to escape to her brain when her blood pressure spiked.


I called all the kids and let them know what had happened. Those that could came right to town. Those that couldn't stayed in close contact on the phone and email.

Once she was in her hospital room, another MRI was ordered of the carotid artery area in her neck. The MRI confirmed that she had, indeed, suffered a stroke. With that, she was moved to the sixth floor, the Stroke Unit. An interventional radiologist came in to tell us that they wanted to do an angiogram on Kim to look closely at the carotid artery that caused her stroke. It was scheduled for the next morning.

We all went with Kim to the radiology floor and stayed with her till they took her back for the angiogram. It took about an hour and a half for the procedure. The two interventional radiologists came out afterwards and told us the news. She had a congenital disease called Fibro Muscular Dysplasia. The carotid artery (and even more frequently, the renal artery, but this was not the case for Kim) has a malformation that looks like little pearls in a section of the artery. The little pearls become pools for blood clots to accumulate in and when blood pressure elevates, it's possible for a blood clot to break loose and travel to the brain and cause stroke. That is what happened to Kim. When we got copies of the angiogram and CAT scan, we actually looked at them at our house. Kim's damaged area looks like little shrimp or curliques, not pearls. There are many of them on either side of the carotid. The worst part is, there is a very large aneurysm connected to the little curliques that is cause for great alarm.