Posts Tagged ‘blood transfusion’

Say “Goodbye” to all of this . . .

June 4th, 2010

Greg and I moved back to our home in Vermont today.  Now, instead of weekly visits to the hospital in Boston, we’ll only have monthly visits.  This would’ve come much earlier had it not been for the (likely) false diagnosis of CMV and the myelosuppressive therapy that ensued, which may well have been key to my contracting the C. difficile that knocked me down so far.  But despite all of this, I’m now doing quite well and feeling very strong.

Last Tuesday during my last weekly visit, I was in the room where nurses take vital signs, and a woman was sitting next to me. She was wearing a mask and gloves, and when this sort of thing happens—when two transplant patients are sitting next to each other—there’s this strange E.T.-and-Elliot thing that goes on; we just want to talk to each other.  Or in my case: I can tell they’d like to connect with me, and I usually resist this, being a curmudgeon and all.  But on Tuesday, the woman sitting next to me just jumped right in.  She started asking me questions about my progress since transplant.  I was in a pretty good mood that day, but had this happened on practically any other day, I’d probably have perceived this as rude prying.  On this day, I saw it as tolerable prying, so we had a chat.  During our discussion, she asked me how far along I was since transplant.  I told her just over two months; she was quite surprised.  She went on to say that she was six months out, and that I looked so good she thought I might be nine or more months since transplant, but certainly ahead of her.

I was pretty surprised by this reaction, and it made me realize that I just didn’t have any frame of reference for how well I’m recovering relative to the average patient.  I’ve always thought that I’ve been doing pretty well, but I’ve never really known.  So I asked my physician what he thought.  He said emphatically that I was doing much, much better than most in terms of recovery, energy level, activity level, and such.  In fact, except for the uncontrollable neuropathy and my problems with the treatment for that (more on that later), I don’t have many complaints.  I’m more energetic now than I’ve been in ten years, and my red blood cell count is still rather low, but rising steadily, so more energy is yet to come.

So, despite my setbacks—the main one being the serious blow I took from the C. difficile—I seem to have rebounded and my health status has more than “caught up.”  My blood cell counts look great for my stage, and my physician has actually started tapering my immunosuppressives, a month or two early.  That means my lymphocytes will come on board earlier (but still many months away), which means protection from viruses.  But this could also mean that Graft Versus Host Disease (GVHD) is going to hit soon.  But GVHD also means Graft Versus Lymphoma effect:  All my cells are me, including any remaining cancer cells that are almost certainly floating around.  If—or rather, when my new immune system recognizes that it’s in a body of foreign cells and initiates an attack on my whole body, that attack will be on any remaining cancer cells too.  In fact, because this attack is mediated by T-lymphocytes—and those cells normally communicate with B-cells when they initiate an immune response—this means that when GVHD does hit, those T-cells will preferentially seek out B-cells during their attack on my body.  As I have B-cell lymphoma, those lingering cancerous B-cells will very likely come into contact with those T-cells that are seeking to fight off my cells.  When this happens, the T-cells will recognize that my B-cells are foreign too, and some of those T-cells can kill my cancer cells on the spot (so-called, Cytotoxic T-cells).

So, GVHD is kind of a mixed bag.  But one thing is certain from the empirical literature: Long-term survivors of stem cell transplants have mild-to-chronic GVHD.  These people are far less likely to relapse, and people who have no GVHD are far more likely to relapse.  So even though I’m over some serious infection hurdles, and even though the majority of death risk is clustered in the first three months post-transplant, I’m about to start facing the next challenges.

But I’m happy to be healthy, at least for now.  And Greg and I are both very glad to be home.  But I think we will both miss our deluxe apartment in the sky-hi-hi.  And just for memento, here are some photos of the view we’ve lived with for the last 75 days:

The Prudential Building (tallest), and a couple of others that no one cares about.

Christian Science weirdos. Despite being cuh-ray-zee, their buildings are "truly beautiful to behold," including this lovely library.

More Christian "Scientists," with their absolutely lovely buildings (all the buildings in view are CS buildings in the famed "Church Park.") The shadow cast is from our sixties-built, 1984-style 12-story building (not run by the Christian Scientists . . . as far as we know).

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Some great news, biology, and cooperation

May 12th, 2010

I feel amazing.

I am so energetic, I can barely contain it.  Anyone who has spoken to me on the phone lately can attest.  For the last two weeks, my energy and strength has been rising every day, and now I feel better than I’ve felt in years.  In early 2007, I was in a brief remission, and I felt wonderful, like I’d felt years before—before the fatigue set it, which happened three full years before my diagnosis in 2006.  I now feel as good as I did during my remission, which can only be good news.

Reasons for my quick recovery are many: Being able to eat, no more diarrhea, and, most recently, the cessation of a particularly nasty treatment.  That treatment, with the drug ganciclovir, is for infection with CMV, cytomegalovirus, the a virus that in healthy people causes mononucleosis.  I was taking this drug probably because of a hospital error.  In order to explain, a brief digression into biology is required. (Regular readers shouldn’t be much surprised.)

CMV is one of the most commonly transmitted viruses on the earth.  The probability of contracting CMV rises with every year over one’s lifetime, and virtually everyone has it by middle age.  Despite this, I luckily tested negative in my pre-transplant blood tests.  Even more luckily, my donor was also negative.  This was great news, as CMV can cause blindness, serious lung problems, meningitis, and death in immunosuppressed people—facts that I remember all too well from my AIDS activism days in the late ’80s and early ’90s.  My early blood tests found no antibodies for CMV, and a highly sensitive test for CMV’s DNA, called PCR (for polymerase chain reaction), also showed negative initially.  However, three weeks into my transplant, a weekly PCR test was positive.  This was somewhat odd.

CMV is a herpes virus, and like all herpes viruses (including the virus that causes chickenpox [Herpes zoster]; Epstein-Barr virus; and of course, Herpes simplex I and II), CMV can hide inside cells that it infects, inserting itself into our cellular DNA.  When this is the case, a DNA test of blood might well be negative.  So if the CMV became active later, a previously negative PCR could become positive.  That part wasn’t the odd piece.  The odd part was my antibody negativity.

Antibodies are those amazing, disease-specific chemicals that our body produces in response to invasion by viral infections.  For every virus that infects us, we have a different antibody (well, almost).  But I was antibody negative for CMV, and that was the weird piece.  If I had been infected before, and the CMV had become quiescent, and then reactivated three weeks after my transplant, I would’ve been antibody positive the whole time.  But despite my suspicions of the apparently discordant blood tests, the positive PCR meant action had to be taken, and fast.  Because of the great risk of CMV infection, my physician rightly put me on ganciclovir immediately.

The great thing about ganciclovir is that it is very successful in defeating CMV.  I remember when ganciclovir came to market; it was a revolution for people with AIDS.  Prior to ganciclovir, having AIDS often meant the loss of sight, or worse.  And nothing could be done to stop CMV.  Ganciclovir changed all that.  But the bad news about ganciclovir is that it suppresses the production of blood cells, especially white blood cells.  After I began taking the ganciclovir, all of the components of my blood—my platelets, red blood cells, and white blood cells all crashed.  After an unusually fast and strong engraftment of my donor’s stem cells, which resulted in my having normal or near-normal blood counts for the first time in years, I was back to square one, and continuing to take the drug kept me there.  And to boot, after this blood cell crash, I contracted that awful Cdifficile infection. Administration of ganciclovir has a known association with infections like Cdifficile.  I had to be treated for the apparent CMV infection, but the treatment made me fragile.

Two weeks ago, my DNA test for CMV was negative, as it had been every time after the first test.  I asked my physician why I would not have anti-CMV antibodies if I had CMV (again, antibodies are always produced when we’re exposed to an infection, and we keep them forever).  After some discussion, my physician agreed that this was odd, and hypothesized that perhaps I’d acquired the CMV infection from one of my many pre- and post-transplant blood transfusions.  But that didn’t explain everything, and I left that meeting unconvinced.

Over the next week I puzzled over all my clinical data.  Why was I antibody negative?  Maybe it was because my immune system was so shot that it couldn’t produce any antibodies.  That is very likely true, but even so, I should still have residual (and easily detectable) antibodies from before the transplant, as they remain in the blood months after they are created.  Considering the DNA tests, I wondered how the ganciclovir could have eradicated the infection so quickly; I’d started taking the drug on a Thursday evening, and by the following Tuesday morning all evidence of the viral DNA was gone.  Ganciclovir is a good drug, but that good?  I asked about this the following week (last week).  My physician—who is remarkable in being open to discussion and input—considered my concerns and took a third look at the data, treating them all together.  The negative antibody test, the lone positive PCR result, and the rapid PCR negativity that never reversed—they just didn’t add up.  After this, my physician concluded that the first CMV test may well have been a false negative positive (this can happen with PCR, because this DNA test is extremely sensitive, and in labs where these tests are run routinely [like mine], contamination can be a serious problem).  As a result, we decided to stop the ganciclovir.  My blood cells, in theory, should begin to rise again.

So, yesterday when Greg and I went to the hospital for my weekly appointment, we were a bit disappointed that my blood cells had not rebounded more.  My hematocrit (one measure of red blood cells) was a bit higher, my white blood cells had gained 500 cells per squared cm (up from ~1,100), but my platelets were down from 80,000 to 50, 000 (both well below normal)—a mixed result.

But given how amazing I feel, I wasn’t too worried about this.  I did ask about the possibility of graft failure—a topic I’ll take up a bit later—but looking at the data on the proportion of “my” blood cells that are truly mine verses from my doner, everything looked excellent.

Stem cell transplant is an unlikely business.  Juggling all the variables—the risk of infection, the risk of Graft Versus Host Disease, the many drugs, the side effects of those drugs—managing all these can all be . . . well . . . at times impossible for both the physician and patient.  This procedure is truly at the bleeding edge of our knowledge, and much of what goes on, and why certain aspects of the therapy work or don’t, is yet unknown. When in a situation like this, in my experience two factors are indispensable: patient self-advocacy, and physician finesse.  Having cut my teeth on AIDS activism, I have no problem telling physicians that this is my body, and we must work together, as co-equal partners, to manage my illness, treatments, and recovery.  My current physician agrees, unusually, and we cooperate to achieve our common goal.  That cooperation is a big part of why I’m so energetic and healthy today.

And it’s good to feel great for the first time in a long time.

UPDATE:  See this post.

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Busy (and greasy) today, hospital visit tomorrow

May 3rd, 2010

I’ve received tons of great feedback from the blog, and I fully intend to keep blogging, hopefully one or two posts per day minimum.

But today I had a lot of work to catch up on (some of which I got done), and the fact that we can’t bathe makes me sleepy, greasy and grumpy . . . and not much in the mood for blogging.  We can’t bathe because a water main ruptured on Saturday, and now the Boston water supply is contaminated with fecal bacteria.  Just the extremely uncommon event I need right now, eh?  As a result, of course drinking tap water is out, which isn’t a big deal.  But showering is also out—too dangerous for me.  So last night I boiled water for hours, slowly filling the tub to take what was ultimately a very unsatisfying bath.  I woke up this morning feeling gross.  And bathing is very important for me in my condition.  Accumulating bacteria is not exactly what I need to be doing right now.  We considered grabbing a hotel in P-town (cheap right now, before peak season), but then we’d have to contend with carpet, and curtains, and any microbiological gifts the previous visitors might’ve left.  So we just stayed put.  Boston water officials are estimating that the water will be potable again tomorrow afternoon.

And to add to the good times, tomorrow I have my weekly hospital appointment.  Walking into a hospital, with all of its multi-drug resistant strains of god knows what is always a bit difficult. Sitting in a crowded waiting room is even more unnerving.  But, in general I actually enjoy meeting with my physician, and our meetings always go quite well.  If my red blood cells, platelets and magnesium are all in good shape, the appointment will be fast.  If not—if I need a blood transfusion, a platelet transfusion, or a magnesium infusion—I’ll be at the hospital all day long tomorrow.

Red blood cell and platelet transfusions are not awful.  I usually break out in hives—likely due to mismatches in subtle details of blood chemistry.  Sometimes this can lead to the development of antibodies, and therefore immune reaction against blood products, but luckily that has not happened to me.  It’s the magnesium that’s so tough.

As I mentioned in an earlier post, I’m taking a drug called tacrolimus to prevent Graft Verus Host Disease—in which my new immune system (correctly) recognizes that my body’s tissue are foreign, and attacks them.  The tacrolimus is part of the chemical milieu that tricks my new immune system into accepting my body’s tissues as self.  It also leaches magnesium out of my body.  I mentioned earlier that I had to take supplements because of my malnutrition, but I didn’t provide details.  A normal daily supply of magnesium is up to 400 milligrams; I was taking six times that for weeks early on, and even then my magnesium was too low.  Very low magnesium means vigorous, uncontrollable shaking, and left for too long, nerve damage (and I already have that from four years of chemo, thank you).  Over time, the kidneys accommodate and stop leaching the magnesium.  But I’m not sure that’s happening to me yet.  If it’s not, I may have to have a magnesium infusion.  The problem with magnesium infusions is that they make me feel like I’m being burned from the inside—and they take hours; one time I was infused for five hours; my physician did not order that torture (a nurse practitioner did, despite my protestations).  And since that lovely experience, my physician has been very good about allowing me to increase my oral doses so I don’t have to endure the infusions, but there is a limit to how much I can take by mouth, as it too causes diarrhea.  Sheesh!

The point is, I might have a quick day tomorrow, or it could be a long, rotten day.  I guess you’ll know which easily enough: If I don’t post, it’ll be because it was a bad day.

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