ITP Personal Stories

The Lady or the Tiger? (The ITP Version)

The Queen Elizabeth II Wing, St. Bartholomew's Hospital, London, England. A grand name for a 5-story chunk of concrete. But within its ground floor is the Department of Nuclear Medicine, with a wondrous machine, and the people who understand her, that will answer a question for me that's almost 20 years old: Should I have my spleen taken out?

Back in the mid-80s, when I was first diagnosed with ITP, there was no Internet to search, no literature to consult, and no Platelet Disorder Support Association, so I relied on my doctor for knowledge and treatment recommendations. Splenectomy was one treatment I rejected because of its low odds of 60% to70% success. It was major surgery back then, and to "cure" a low platelet count, a splenectomy just didn't seem like a good proposition to me. I elected to take the only other treatment offered at that time: prednisone. Is there any person with ITP who doesn't know about this cursed wonder drug? It took about 17 years before I learned enough about prednisone, both from the literature now available and from my own experience, to swear off this drug forever.

From the beginning my only symptom had been bruising and minor cuts that bled more than they should before stopping. I have been remarkably healthy and have not missed a full day from work due to illness since November 1979. I consider myself very fortunate (and lucky). I have had a good deal of random joint pain, however, that I've heard many other ITP people experience. I haven't really stopped any activity since I was never an athletic person to begin with, but I no longer seek out horseback riding experiences and stopped riding my bike to work routinely, especially when my counts were very, very low.

Over the first dozen years or so, my counts stayed fairly steady in the 60s and 70s, with an occasional spike upward that didn't last very long. My blood was tested every four to six weeks by my watchful physician, and every now and then he'd ask the question: Will you consider having your spleen taken out? My standard answer was always no.

I've tried Danazol, Rituxan, IVIG, Winrho, Chinese herbs, diet and homeopathy. All showed an initial benefit, only to prove close to useless in the end. Even prednisone eventually lost its effectiveness, requiring larger and larger doses to get the job done with a corresponding loss of quality of life.

Many years and several doctors later, I eventually tapered off prednisone for the last time and my counts held high enough to keep me mostly bruise free. After about six months of freedom from all drugs, two years ago my arms were suddenly bruising again, then the rest of me broke out in my own version of "temporary tattoos." I didn't need a blood test to tell me my count had plummeted, but still the number was scary: 7,000. I had some very lonely platelets! With a few exceptions, my counts have stayed under 10 since then, getting down to 1 now and then. I looked back at those days of 60-70 counts with nostalgia. But I still felt fine, just colorful.

Throughout my life with ITP I have always felt fatalistic about the ultimate consequence of my condition--a sudden serious bleed that could end in death. It was too hard to stay on high worry alert when many years went by without any serious bleeding. At PDSA conferences I was surrounded by others who were living successfully with ITP, even with very low counts, and I expected to continue that way indefinitely. I did get tired, however, with the same question from health professionals: why don't you have your spleen taken out? What it if wasn't my spleen but the liver? Meanwhile, medical advances made splenectomies less risky: it was now "Band-Aid" surgery rather than major surgery. Still, I was doing fine as is, so why change?

At the June 2003 PDSA conference in Chicago, I heard Drew Provan mention the platelet lifespan study, currently offered in London and maybe in Seattle. Well, my ears pricked up in a hurry. My husband Davy and I go to London every year at Thanksgiving time, and suddenly I felt relief that I would be able to get an answer. Why not take the test during our next trip to London? Through a series of e-mails with Dr. Provan, I made contact with Dr. Britton at St. Barts and set up an appointment for December 2.

On our annual vacation, after a wonderful week in Paris, Davy and I arrived at our rented flat in Hampstead and on Tuesday, the second of December, armed only with a book and some hope, went off to St. Barts by tube. I knew that the entire day would be spent at the hospital, beginning at 8:45 a.m., and it turned out to be the most relaxing day of my vacation. My most consuming hobby is reading--if I have a good book to read, and some quiet to enjoy it with, what heaven that is.

The schedule for the first day was: Report for initial blood work at 9; have the indium platelets injected at 11:30; first scan at noon; second scan at 3:30 and leave the hospital afterwards.

I met Professor Keith Britton, who was an older, distinguished white-haired academic type, smiling and gracious. One of his assistants was Nish, a petite gal from Sri Lanka who has been doing this for 21 years, but looks no older than 29. The first step was to withdraw blood. I had been a little concerned about my eligibility for the test: Dr. Britton wanted at least a count of 5,000 and I was often under that amount. But it turned out that my count was 14,000 that week, giving him plenty of platelets to work with. That first morning, when he turned to me with the syringe in his hands, I thought immediately of all those cartoons with syringes big enough to treat a horse. It was the biggest one I had ever personally seen. 50cc later, I was free for almost two hours while the blood would be centrifuged into its components. The isolated platelets would be died with indium and put back into me for tracing over 48 hours. I asked if I would glow in the dark. Unfortunately, that doesn't happen.

London became my waiting room between tests. St. Barts is located near the huge Smithfield Central Markets (think ham) and Barbican area of east central London, an easy tube ride away from Hampstead up north. I wandered towards St. Paul's Cathedral, which was partially bandaged with protective wrap while its external stones were being cleaned, then I settled in a computer café and checked e-mails while sipping tea. After some reading, I returned at 11:30. The indium platelets were a milky tan. They were injected into my right arm, and that arm could not be used again for the coming blood tests.

Then a short wait until noon for the first scan. The machine's plaque said she's a camera donated by the family of Michael Stanley McCarthy of London and Ballybunion. Thank you, McCarthy family. The camera looked similar to a traditional MRI machine but was completely silent, scanning the front and back of me. Her sides were open, so I felt like the filling in a hoagie sandwich. Two paper tapes with metal dots were put on my chest to allow perfect alignment from test to test over the coming days. The tapes had to stay on, and itching became a problem by the third day. The actual scan took about 6 or 7 minutes. Then I was free until 3:30, when there'd be another scan.

This time I settled into a cozy nearby pub, where I was free to read, sip some cider, order lunch, and eventually wander back to the hospital. Dr. Britton showed me the early results on a computer that had some fancy software, but showed the images in black and white. Even I could see what these early results meant.

My scanning was also sometimes done by a gentleman named Jag, an Englishman of Indian heritage. His passions were cricket, Bollywood movies and American westerns. All the staff I met at St. Barts were very cordial, friendly and professional.

After an uneventful (what would have been eventful?) afternoon scan, I left the hospital a little after 4:30. Although this was a full day of waiting between tests, my first day had been so peaceful and relaxing. There was no hurry, no pressure to do anything but read and show up at the right place and time, and not many choices to make or distractions to endure. I was reading Alexander McCall Smith's delightful book The No. 1 Ladies' Detective Agency, and it was such a treasure that it made for a nearly perfect day. That is, until I tallied up my encounters with needles: 6 sticks: 4 taking stuff out, 1 putting stuff in, and my first ever dry hole attempt. I must say, I have wonderful veins, just right for multiple blood draws, but my luck ran out that day.

I asked Dr. Britton some questions about the Indium Platelet Study: it has been offered in Liverpool and London for about 3 years and London does one or two tests a week. He considered ITP to be rare, saying that out of the 40 million people in the United Kingdom who were eligible to take the test should they be diagnosed with ITP, only a few are done each week.

I returned Wednesday and Thursday mornings for scannings at 10 a.m. Blood was also drawn each day, but my left arm had to be used because they could not use the sight where the indium had been injected. By the end of three days, my elbows were very bruised and sore. They took about three weeks to fully recover.

The next week I stopped by the hospital to see Dr. Britton and receive a formal written report. The report was all of 3 pages long; one page was a graph in color showing liver, heart and spleen graphs, one page showed a series of images in black and white of my spleen and liver at various intervals, from 1 hour to 48 hours. The spleen was a dark blot; the liver was barely visible. The last page said, "Conclusion: very marked splenic sequestration. Minor liver uptake. Splenectomy should be beneficial." My Visa statement said $1,808.21, or around $150 per word, but the test gave me the reassurance I needed to make the decision. I know there is no cure for ITP, only treatments, and that in time the liver could figure out how to eat up my platelets, but at least initially after a splenectomy I should show higher counts. Finally, I had an answer, and I was grateful for the knowledge. So, my spleen's outa here.

Should this Indium Platelet Study be of interest to you, feel free to contact Dr. Britton at his e-mail address: k.e.britton@qmul.ac.uk Tell him Eluise sent you.

-- Eluise (eluise@pop.dnvr.qwest.net)