Annelle Beall

Patient

My name is Annelle Beall. I am a 59-year-old registered nurse, working as a nurse manager for an inpatient surgery unit and the critical care unit at a community hospital in Portland, Maine, USA. I also hold a certification as a nephrology nurse. In December last year, I had a brief cold, more intense than my usual colds in that I actually stayed out of work for a day. About three weeks later, I had a weeklong bout of nausea without vomiting (except for two or three times over the course of the week). I went to work, but I felt nauseated 24/7. I ate nothing that week but saltines and lemon-lime soda. I thought I had a virus, but it never improved. My routine appointment with my primary doctor was the next Friday. At work, many had told me I was pale, and I should go home. They had been telling me that all week.

I had a long weekend because of the Martin Luther King holiday, and I planned to go in on Monday for part of the day to do some catch up work and to administer some annual appraisals for staff. I was going to call Monday to see if my primary care doctor could take me a little early since I had been feeling sick for so many days. On Sunday night, my spouse, DL, asked me a question, and she and visiting relatives noticed that my speech was slurred. She came over to me and asked me to say a few sentences, and I had trouble for a minute or so trying to speak clearly. I also noticed some fingers on my left hand were numb, which was very odd.

My spouse and relatives wanted to call 911, but I said let's call a colleague ICU nurse. She gave me some very good advice: "If you called your primary doctor right now, what would she tell you to do?" I replied, "Go to the Emergency Room." So that is what we did.

When I arrived, they took me back immediately for transient ischemic attack (TIA)-like symptoms. I was no longer slurring, had no numbness, but for me, things were becoming very distant. DL told me I was extremely clear in my speech, and I was appropriate, but I remember very little about the events that followed. I remember things as if I were asleep and would wake up for dribs and drabs. I remember DL and the emergency nurse being shocked that my platelets were so low—17 instead of the usual 150-200. I was anemic as well. I thought, "How can I be anemic?" Just the day before, we had chipped an approximate three inches of ice off of the driveway, making it clear for our relatives who were coming. I kept being asked by every provider, "Have you had diarrhea?" "Have you had a virus?" Of course I had had the very brief cold-like virus in December, and I had been nauseated for the week. (It was later theorized that my "gut" was not receiving as much blood as it needed, because that blood was being shunted to vital organs.)

But nothing prepared me for what would come. I was kept in the hospital where I work overnight on telemetry while further tests were done to determine what was going on. Because my blood tests were so odd, hematology was consulted. The next day, it was suspected I had TTP. We were told I would have to go to the large academic hospital in order to obtain plasmapheresis. It wasn't until late the following night that I could be transferred - it was winter and beds were at a premium. I remember nothing about the time frame of the events. DL has had to tell me how things unfolded.

I remember only a brief conversation with my admitting nurse. The next things I remember are all from what I can only describe as a dream state. I remember a face here, a thing or two there. It was not until about eight hours later that a catheter was placed. The first attempt, because of the emergent need for a plasma exchange treatment, was having a femoral catheter placed. But during that process, my femoral artery was nicked. I then had to be taken to interventional radiology for a tunneled catheter into the jugular.

As a nephrology nurse who had run a dialysis program, I was familiar with the diseases ITP and TTP, but had had no experience with them. At a previous hospital in Georgia where I ran dialysis, the ICUs did all pheresis procedures. And oddly enough, my father had developed an idiopathic autoimmune Factor VIII disorder in his 50s where he had to be shipped to a large academic medical center in North Carolina for plasmapheresis and Factor VIII transfusions. He and my mom were told he had something that happened to only 4 to 5 people in a million. This history seemed irrelevant to all of the providers to whom I relayed it. It did, however, provide some sort of understanding of the severity of the illness.

DL told me that on the way to the dialysis unit for plasma exchanges that I vomited, and became unresponsive. It was determined my EKG showed a non-ST elevation MI (heart attack) secondary to the anemia. Therefore, I was taken to the intensive care unit for observation, where I received my first few treatments. I began to improve, and was moved out to the floor into a room. When I became "fuzzy" again, my platelets had dropped, and so it was determined I needed twice a day treatments. One of the days I was so clear after rituximab and a good solid week of treatments, I asked DL to bring me some "real" coffee--as opposed to hospital coffee. She brought my coffee, and went out to get something for herself. When she returned, I was stroking my face and saying "stroke". I remember the flurry of people responding. I remember I said, "I know what my name is." But I couldn't really say my name. I could say that I lived in Scarborough. And I wanted to tell DL that I felt comfortable because the stroke team was there, but all I could say was "stroke" over and over. Again I had some days where I remember little. Part of my fuzziness was from cognitive changes due to TTP, some from my stroke, and then much from the amount of IV diphenhydramine I was receiving as a premedication to avoid an allergic reaction during plasma exchanges. Eventually, I improved after 20 plus days in the hospital under the care of numerous doctors, notably the hematologist Dr. MB.

I continued outpatient plasma exchanges for another week and a half. I had one additional rituximab treatment. Because Dr. MB does not practice within my hospital's insurance group, I transferred to the oncology/hematology service of Dr. AN following my discharge from the hospital. I also received outpatient occupational therapy to help my cognitive abilities so that I could return to work, which I did the end of March and was cleared to begin driving again by May.

Not remembering a huge chunk of my winter is distressing. I have read the update emails DL sent to friends and relatives and much of my chart from both hospitals so that I could better understand what my course was. Reading my chart, I would often have to ask DL to provide some additional clarification for me.

It is heartbreaking to know what she went through during this time. How she had to face my having such a life-threatening illness. We both had wondered if I would ever be able to return to work. As I recovered, I would call my mother every day. She remembered what my dad had gone through, although he had survived his diagnosis, he has since passed. She wanted to hear that I was OK.

I never had the characteristic "purpura". The morning I went to the hospital, I had had a big blood blister inside my mouth. It had resolved before I went to the hospital--no one there could even see it. I had one bad bruise on my right forearm--that bruise remained until I returned to work.

Every bruise that surfaces makes me worry. One day after I had gone back to work, I had another one of those blood blisters in the exact spot the other one had been. I was having blood drawn that week, so I anxiously awaited my results, which were normal.

Every time I forget something or have trouble with recalling a word, I worry. I don't know how much of that is normal, or if it is a recurrence. I have been in remission for a few months, and have "graduated" to monthly lab draws and quarterly hematology follow-ups.

No one would know I had ever had any sort of cognitive impairment, let alone a "stroke". But I can't help but feel there was some sort of "damage" that has taken some of my sharpness. I struggle with wondering if I should take early retirement simply because "life is too short."

I do like to share one silver lining that came from my having TTP. When I was hospitalized, a friend called her emergency room physician friend in another state to ask her to explain TTP. A few days later a colleague of the emergency room doctor friend came to her with a case of one of the ED patients with very low platelets. That colleague wanted to give platelets. The ED doctor thought for a moment and said to rule out TTP first. That could have saved that patient's life. The diagnosis was confirmed as TTP. That was done more quickly because the ED doctor friend had TTP in the forefront of her mind.

Awareness is key. Answering TTP is working to get that message out. I wrote an article for my state's nurses' association newspaper regarding the nursing care I received. I now wear the red TTP bracelet and I have gone to thank donors at the hospital's blood drive. I even signed up as a potential test subject at a government-affiliated website. It was disheartening (even if not unexpected) that under the TTP heading it said there were not enough respondents for a research study.

I have been well known for saying "best day of my life" whenever I am asked how I am doing. My favorite t-shirt is one that says "Half Full" on it. Even though I am one of the most positive people you will ever meet, I do feel there is a relapse just around the corner. TTP hit from out of the blue. I would like to feel it will never hit me again, but that is something I cannot shake right now.

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