Blood and Bone: A Painful Journey of Recovery

I’d never ached so much from my bones. Each and every bone and joint, a dull and steady note of mild pain and discomfort. No throbbing, no sense of waxing and waning like other times I’d ached; I found it odd just how constant and invariable the sensation was. It wasn’t painful as much as disorienting. It was uncomfortable.

I was warned about the pain beforehand, but without the point of reference I only had the faintest idea of the sensation. It was like the ache of the worst flu, multiplied by two or three. It was a reminder that my skeleton was not just some inert pile of bones in the corner of a science class; it was a reminder that my bones were themselves an organ, full of tissue and life.

I was receiving doses of filgrastim (or Neupogen), a chemotherapy recovery drug. After four days of it, I felt like I’d magically aged forty years — aching bones and joints and shooting pain as I often tweaked my hip or spine as I moved about.

Filgrastim makes the body produce more neutrophils (the type of white blood cell that protects the body from bacteria and fungi) and hematopoietic stem cells (“peripheral blood stem cells,” or PBSC). The stem cells are incredibly important, since all other blood cells — red blood cells, platelets, the other types of white blood cells — are born of these.

Chemotheraphy — taking cytotoxic drugs that usually destroy fast-reproducing cells — frequently wipes out these very white blood cells and blood stem cells as collateral damage. So, in people with weakened immune systems — like those undergoing chemotherapy or those with certain blood diseases — the boost of white blood cells and stem cells can, in theory, help the body protect itself and recover sooner.

I was an active participant in this process, taking filgrastim to force my body to make excessive amounts of these cells. After a few days, the cells would be harvested and shipped — transplanted into the body of a chemotherapy patient whose own body would no longer have the bone marrow to generate these lifegiving cells.

Donations for the National Marrow Donor Program take one of two forms: there’s the “classic” bone marrow transplant, involving sticking a needle into bone matter — usually at the hip — to extract marrow. And then there’s a version that “just” requires peripheral blood stem cells. Through a series of phone calls, cheek swabs, paperwork, blood tests, and more phone calls and paperwork, I went from being a partial match to being a backup donor to (after a primary donor fell through) a PBSC donor for a patient with a life-threatening disease of the blood.

In the diseases treated by these donations, it is the bone marrow (which creates these cells) or the immune system or some part of the blood (created by the bone marrow) which contains the anomalous, dangerous cells. So a patient is in a quagmire, since bone marrow, the tissue that generates the immune system and blood, is also the tissue essentially fueling the disease by allowing more anomalous cells to grow.

Treatment works like this: Chemotherapy or irradiation is used to eliminate the disease by destroying the bone marrow. You grow new bone marrow with peripheral blood stem cells. Unfortunately, the thing pumping out the stem cells has just been destroyed, so this is where donors come in: you either harvest PBSC directly from a donor’s bone marrow, or you have a donor generate an excess of PBSC into the bloodstream and scoop that up.

Once the process starts rolling, a point of no return happens: at the same time that I started taking filgrastim shots, the recipient was starting their “conditioning regimen” of chemotherapy or irradiation. It’s one thing to say “yes” to having a chemotherapy recovery drug injected into you. It’s another to be told that you should “really avoid any risks over the next few days, because if anything happens to you, the recipient will definitely die.”

I’ve never been a big fan of needles. I have vivid memories from about 6 years old, screaming and thrashing as a nurse held me down so the doctor could give me a shot in the leg. But by now I’d had several blood tests for this and the sight and sensation no longer bothered me — I was thrilled to do this and the blood tests and the filtration doses were probably going to be the easiest part. (And no doubt infinitely easier than what the recipient would go through and had been going through.)

The aches began slowly at first. Nothing the first day, save for an odd sense of malaise and disorientation as the day progressed. An ache and a tenderness in the hips and back and rib-cage met me when I woke up the following day. By the fourth day the dull, steady arches had seeped into all of the large bones and the sensation had become a fact of life. It was enthralling in some ways — new pains and sensations and experiences, in parts of the body normally never felt. Mild pain from inside my bones, a sensation I literally could not have imagined for lack of a reference point. The ache was part of my existence at that moment, and I was resigned to it as there was nothing I could do about it. As someone who had not yet lived with such chronic pain, it was enlightening; the kind of feeling I wish more people could experience before looking upon others.

I was warned of the worst side effects and, as a nerd, had then read too much into scientific papers and research, becoming worried at every single pain I felt in my abdomen lest my spleen rupture — the worst case scenario. (It didn’t, obviously.) All of this trouble to attempt to save the life of a stranger that I’d never meet.

On the fifth and final day, I received my last dose of filgrastim at the blood center. After final bloodwork to determine just how much excess neutrophil and stem cell material was now in my blood, I was hooked up to an apheresis machine for eight hours. An apheresis machine essentially separates the parts of blood by weight, skimming off certain parts much as a cook would skim the fat off of a pot of soup.

The average male human at 160 pounds has about 5 quarts (4.7 liters) of blood. An eight hour apheresis at the usual rate would place twice that amount of blood through the apheresis machine — or, put another way, most of my blood will have exited and returned to my body at least twice.

When blood leaves the body it tends to coagulate, thickening to a gel almost immediately. Great for healing wounds, not so great for having blood come back around after filtering. So, a little bit of citrate gets put into the blood as it heads back to the body, which counteracts the gel-forming blood cells a little bit.

But calcium in blood likes to bond with citrate rather than wait to get bonded to proteins, so the blood’s calcium stores get spent right away. You get hypocalcaemia, which leads to the tingly “pins and needles” feeling everywhere and lightheadedness and worse things. We armed ourselves with a bottle of Tums to replace the calcium, and I ate a tablet every time I started to get lightheaded — until I’d had the maximum safe dose.

My blood, rich with excess neutrophils and hematopoietic stem cells, exited one arm, ran through the machine, and returned through the other arm — much cooler, since the room temperature and addition of anticoagulant citrate had cooled the blood significantly. (We were also in the midst of one of the coldest recent winters in New York.) Most of the day, I was tucked under a thick blanket to keep me from getting too cold.

I had a stiff needle in one arm, rendering it immovable. In the other arm, a flexible catheter let me use the my phone and control the television at my seat. I bode my time with Twitter and watching ESPN talking heads uncomfortably argue about sexual orientation. A vein closed up during the middle of the day and some time was spent poking holes into my arms, seeking new spots for the needles until we got adequate blood flow again. One of the techs was Russian and made some jokes about the Sochi Olympics.

At the end of the long day, my donation finished without any major complications. I collected my things and left the building with no ado, no pomp, no circumstance. Lightheaded and unable to get relief (long past the maximum amount of calcium I could take in a day), I nearly passed out in a taxi and went to bed within minutes of arriving back at my apartment.

Other than a few regular follow-up calls to help diagnose me for side effects, I heard nothing else for weeks. What I did know is that before I had even left the blood center, the bag of blood and the accompanying paperwork were whisked away by a courier. And by the following afternoon, the contents of that bag — literally, lifeblood — would be coursing within the vessels and veins of a patient whose immune system and blood and marrow were wracked to eliminate a vile disease. If all went well, those stem cells — grown by my aching bones working overtime thanks to the filgrastim — would course through their veins and become their new bone marrow, their new source of blood cells, their new immune system. (If it didn’t, well…)

Weeks went by without any updates as I quickly recovered and went back to my life.

Several weeks later, likely timed with the donation’s engraftment and early recovery phases, I got a series of updates: the recipient was alive, the donation hadn’t been rejected, and they eventually got to go home to continue their recovery. The worry and wonder I cast toward the mystery was replaced with elation.

I’d given a stranger a second chance at life.