About once a month since spring of last year, I have been donating platelets at my local Red Cross. The latest trip was last Thursday (April 7, 2011). Platelet donation is a bit more involved than donating whole blood. A pint of whole blood takes one needle and is complete in about fifteen minutes or so. Platelet donation requires a needle in each arm, and takes about one and a half to two hours. (There is a method that allows just one needle stick, but it still takes roughly the same time.)
In a platelet donation, blood flows out of one arm to an apheresis machine, which separates the platelets from the blood. The harvested platelets go into a bag dangling above the machine, and the rest of the blood (red blood cells and plasma) travels back to the body via the needle in the other arm. Because only platelets are harvested, donations can be made every two weeks or so, if other limiting factors, like damage to blood vessels from needle sticks, don’t interfere. The local Red Cross has something of a list of donors they call on regularly, and they call me about once a month, which is frequently enough for my tastes. Considering that there is now no specifically-intended beneficiary of my platelets, such as was the case during my son’s bone marrow transplant, a bit of recovery time is helpful for maintaining the altruistic initiative. But as the tag line of the Red Cross blood donor program states, “The need is constant. The gratification is instant. Give Blood.”
I figure instead of paying things forward, I’m trying to pay back an impossibly huge debt. Over two hundred units of blood or platelets were donated during blood drives held in my son’s honor. He probably used about half to three-quarters of that amount. If I donate at least ten units of blood or platelets per year, I figure I’ll be even by about 2030, hitting 200 units by the time I turn 67. Then I can die.
Platelets are critical to the clotting of blood. They are one of the three main products of the bone marrow (red cells and white, i.e., immune system cells, are the other two). Since the host bone marrow must be very nearly completely destroyed in order to effectuate the transplant of a new marrow, platelet production plummets to zero over the course of a typical transplant, and stays there for several weeks, even months, as the new marrow takes hold and begins to grow.
Platelet levels are considered a critical marker determining bone marrow health. Platelets live only about five days–shorter than all other bone marrow cells except for neutrophils (a type of white cell)–so the levels will fluctuate heavily depending on the bone marrow’s viability. In the bone marrow transplant context, platelets are usually the last to go (completely), and the last to fully recover.
Platelet levels normally vary between about 150,000 per microliter of blood to roughly 400,000. With active bleeding, anything below 10,000 platelets is considered critical, requiring immediate transfusion. Most hospital guidelines require platelet levels above 50,000 before invasive (i.e., that involves actual cutting) surgery can proceed.
It was not that long ago when medicine first discovered what platelets were and what they did. According to The Cure of Childhood Leukemia: Into the Age of Miracles by John Laslow, MD (1995), it was 1959 when the first significant study correlating platelet levels and bleeding was published in the New England Journal of Medicine. Once it became clear that platelet levels and bleeding were inversely correlated if a patient had low platelets (as platelet levels increased, bleeding decreased), all that was left was to develop a quick, easy and accurate method for determining platelet levels and for extracting platelets from whole blood. Within a very short period of time, platelet infusions became standard protocol for patients with bleeding episodes and low levels of platelets, from The Cure of Childhood Leukemia, quoting Emil J Freiereich, MD, one of the pioneers of medicine in the cure for leukemia, circa 1960:
“But on further reflection I said, ‘Let’s just cut the crap [on further studies of platelet infusion efficacy] and just eliminate hemorrhage.’ And Kliman said, ‘I’m like you, let’s just eliminate the hemorrhage.’ And he told me that, if I could get the donors, he’d give me the platelets whenever I needed them. Whenever a patient anywhere on the whole Leukemia Service began to hemorrhage, we measured the platelet count. If it was low, we transfused platelets. Gordon Zubrod came on rounds one day and he said, ‘You know, Freireich, I remember the first days we made rounds here and all the kids had blood on their pillows. Now I don’t see any blood on any pillows.’ That made me feel good. I had made a rule on the Leukemia Service that if I ever spotted a patient bleeding, the fellow responsible would get axed. There was not a single patient who didn’t respond to platelets.
Would that my son’s bone marrow transplant unit have had the same rule. It was early December, after the massive doses of busulfan (the chemo agent) had finally begun their dirty work on his marrow, causing his white count to plummet near to zero, with the platelet levels close behind (red cells are much longer lived than neutrophils or platelets, so don’t so rapidly decline, even when the marrow has ceased functioning), that I walked into his room one afternoon after having been spelled for the day by my wife, and found the place looking like something out of a low-budget slasher flick. There was blood everywhere. He’d had a nose bleed since about noon that day, and was still bleeding. He was swallowing a goodly portion of the blood, which he would then puke back up into a bucket (the busulfan does a number on the gastrointestinal tract, too), which would cause his nose to bleed some more. I checked the blue card on which they catalogued the levels of the three main blood types–white, red and platelets–and found that at 4:00 am–the last time they had run labs–his platelet level was 8,000. Still, he had not had a platelet transfusion.
“Why?” I asked my wife. She didn’t know. My blood boiled. I flew to the nurses station and asked what the problem was with getting the kid some platelets. I pointed out, in case they weren’t aware, that the average teenage boy goes through about 30,000 platelets a day, and he only had 8,000 about twelve hours ago. He likely didn’t have any about now. They answered that they had platelets on order. “Where’s the doctor?” I asked. “Oh, he knows about it”, one of the nurses replied, “He said that they were low on platelets”.
I was flabbergasted. I knew it wasn’t the nurses’ fault, so kept my anger and rage controlled enough to get back into the room, whereupon I just laid into the ineptitude of the doctor to my wife, “They’re low on platelets, he says. I’ve got about 400,000 of them I would gladly give them. How can anyone agree to do a bone marrow transplant and they’ve not got a steady supply of platelets? If we were downstairs (in the HemOc clinic, where we were for the pre-transplant chemo to get the leukemia in remission), they’d have had the platelets within the hour.”
The kid was bleeding so much until I was worried he might get critically low on red blood, too. A body can live just fine for a short time without white cells and platelets (but not platelets if there’s bleeding). Without red blood cells, it dies. As everyone knows, red cells carry oxygen from the lungs to all the rest of the body, and depriving tissues of oxygen, particularly brain tissue, quickly kills them.
Apparently they were worried about such things, too, because when they finally got around to infusing him with blood products, they started with a bag of packed red cells. Which was stupid to have done without first having delivered him some platelets. Platelets can be infused in about thirty minutes, and without platelets, infusing packed red cells simply meant that he had more blood to bleed. And because there was more blood, his blood pressure would rise, which also causes more bleeding (like a ruptured garden hose will leak more if the water pressure is higher), and bags of packed red cells contain a blood thinner to keep them viscous enough that they will pass through the infusion tubes, causing more bleeding still. Utter stupidity.
They finally got him a bag of platelets about an hour after the red cell transfusion–along about seven that evening–and another hour or so later, the nosebleed finally quit, more or less for good. We never once saw the doctor that was on duty during the time of the nosebleed, and they always have a doctor on duty, i.e., permanently stationed at the transplant unit just down the hall from the nurses, not just on call in case he’s needed.
The next day when this same doctor came around for his rounds, I lit into him. Doctors aren’t accustomed to being questioned by their patients or patient’s care-givers, but I’ve never been one that believed doctors to be anything extraordinary. I had been adopted at age five by a doctor that had married my mother. He was a decent enough guy, but nothing about what he did was all that mysterious or difficult, and he certainly had no patina of godliness in my eyes. I had already made a few phone calls to set things up for a directed-donation account for my son, and let the doctor know that it would never again be an excuse that he not have platelets ready and available for whenever my son was bleeding. The doctor was a bit taken aback. He’d probably never had anyone call him on his managerial incompetence. He probably thought that it was his job to simply read charts and know which medicine to prescribe and not worry about the nit-picking details, like whether or not the prescribed treatment was available. I let him know that wasn’t good enough.
There is absolutely no excuse in this day and age for a hospital to undertake doing a bone marrow transplant and not have a steady and reliable source of platelets. If for some reason the supply system fails, it is the treating physician’s responsibility to stand on desks–to do whatever–to make sure his patients get the platelets they need. Hospitals always have an extra bag or two of platelets, or can coax an extra bag out of the providers. But obviously this doctor had never had anyone hold his feet to the fire. He hadn’t enjoyed the tutelage of Dr. Freireich (quoted above), or learned anything by his example. He thought he could simply idle by his two-week shift as the attending doctor on the bone marrow transplant unit. He knew his patients were too young or incapacitated to ever question him on anything, and counted on most of his patient’s parents and care-givers being too intimidated or stupid to demand the proper level of care for their kids. Wrong on both counts, bud. I was going to hold someone in that hospital liable for treatment mistakes, and allowing a kid to miserably bleed nearly all day long with the excuse that there weren’t enough platelets is a treatment mistake of the treating physician. Managerial competence requires follow-up. I assume the doctor thought his medical license gave him all that unquestioned authority for nothing; that he got all the rights but none of the responsibilities. He might be surprised to one day to find that’s not what the law says (as I explain here), but that’s a different story.
Thus was renewed my skepticism that I had picked the right place for my son’s second bone marrow transplant. It was the same transplant unit and hospital where his first one had been performed, and I was not impressed the first time. When he’d suffered from post-transplant lymphoproliferative disorder (PTLD) the first time, it had taken the transplant unit four weeks to make a proper diagnose, during which time my son very nearly died. PTLD is a very common complication of solid-organ transplants. It’s not as common in transplanted bone marrow, but it’s not some esoteric disease about which no one knows anything. I stumbled across the disease doing research on the internet before the doctors even made the diagnosis. One might expect all transplant doctors ought be aware of it.
None of the doctors from the first transplant were still around, which should have been a huge red flag right away. Constant and rapid turnover in an organization, especially of the management team–which is what doctors essentially are in a transplant unit–is a sign that there is something profoundly lacking or nefarious. We were coaxed into using the unit again by the treating HemOc doctor (the Paul Simon look-alike). As I was beginning to realize with this first episode of incompetence at something so basic as managing platelet levels, our decision would prove to be a mistake. It seems amazing in retrospect, but platelet levels figured heavily in most of the remaining episodes. And managing platelet levels is something akin to bone marrow transplant medicine 101. A well-trained monkey could do it.