Here’s blood in your eye

by Gil Poulsen | Oct 31, 2014 | Medical

APOLOGIES FOR the lurid yet fiendishly-clever-as-usual title, but trust me–it’s no less appropriate than was last week’s POODLEs reference. Not only is today All Hallows’ Eve, a time for all things sanguinary, but it just happens to be the 2nd anniversary of my stem cell transplant, undergone whilst witnessing the devastation of Hurricane Sandy from my hospital room window.

Plus, I’m way overdue for a medical update, and what with all the security breaches and new operating systems with which we’ve been inundated recently, I figured you could use a break from the geeky computer stuff. So let’s jump right into some geeky medical stuff instead.

As I noted right around this time last year, the sheer volume of blood moved in and out of one’s body prior to said transplant is about as sanguinary as it gets. Yet through it all, the docs and I remained sanguine and thus, here I prattle to report on my current condition re: chronic graft vs host disease and an innovative but, ah, sanguinary new treatment for that most vexing of conditions afflicting much of the cGVHD population–keratitis sicca, a.k.a. dry eye.

BECAUSE OF the way cGVHD causes a stubborn and severe inflammation of the tear ducts, we transplant patients end up with a pretty high-octane version of dry eye–the kind that is virtually debilitating at times, and doesn’t respond to artificial tears, lubricants or even the vaunted Restasis–although that does seem to work quite well for the attractive eye doctor in the TV commercial.

So what have the best and brightest researchers recently conjured for us keratitis sickies? As you’ve probably deduced from all of the above, it has everything to do with… blood.

Seems that the only area of our body that is not threaded through and through with blood vessels is the cornea–the clear outer covering of the eye over the pupil. Clear being the operative term here–if the cornea were intertwined with blood vessels, it would no longer be clear, and we’d have only four senses with which to work.

SO HOW DOES the cornea receive the nutrients that blood transports to all the rest of our cells, if the blood has no way to get there? Why, tears of course. Seems they’re not just for keeping your eyes lubricated (courtesy of the tear film that covers and protects the cornea); they also carry the same nutrients that your blood supplies to all other parts of your body.

These researchers therefore theorized that if they mingled the blood from an individual suffering from severe dry eye with artificial tears, in just the perfect proportion, they could create an autologous serum in the form of eye drops that would work as well as the real McCoy. Tears of renown, if you will.

Sounds simple, perhaps, but the early returns have been promising. Here’s an excerpt from a recent study published at the Wiley Online Library:

Theoretically, autologous serum eye drops (AS) have a potential advantage over traditional therapies based on the assumption that AS serve not only as a lacrimal substitute to provide lubrication, but also contain other biochemical components mimicking natural tears more closely. The application of AS in dry eye treatment has gained popularity as a second-line therapy in the treatment of dry eye. Published studies on the subject indicate that autologous serum could be an effective treatment for dry eye.

THE REST, as they say, is history. To wit: In a most happy coincidence, AS happened to be exactly what Manuel B. Datiles, M.D., the ophthalmologist with whom I was fortunate enough to meet at last year’s NIH trial, was–and still is–experimenting with.

This smidgen of information I gleaned at the trial led me to broach the subject of AS with one Leonard Bielory, M.D., he of the STARx Allergy & Asthma Center in Springfield, NJ and the immuno-ophthalmologist I’ve been visiting recently. In an even happier coincidence, he’s already been preparing AS for some of his patients, and has offered to whip up a batch for yours truly in the very near future–but only if I agree to just a little more bloodletting, of course.

TO WHICH I say: Why not? It is Halloween, after all. And what’s Halloween without a little, er… blood let for tears.

The Team G pumpkin, as carved by sister Lori and family

Next: Back to computer/technology stuff that I’ll pretend you’re actually interested in

The Twelve Zero Days of Christmas

by Gil Poulsen | Dec 23, 2013 | Medical

By now, it should be apparent that no genre of music–classic, holiday or otherwise–is immune from parody once I take keyboard in hand. This one’s a bit of a stretch, though, so stick with me here. When last I shared the most recent details of my multiple medical misfortunes, I had just returned from the NIH clinical trial in Bethesda and was preparing for a battery of childhood immunizations to replace those erased courtesy of the transplant process.

I’m happy to report that those seven shots did cover most of the old standards like hepatitis B, polio, diptheria, tetanus and pertussis, and therefore I should be able to go about my business confidently in the coming years, secure in the knowledge that no matter where my travels take me, I am protected from whooping cough and lockjaw.

I did find the measles/mumps/rubella vaccine conspicuous by its absence, but as it turns out I will need to get booster versions of all the aforementioned vaccines at the end of January, and yet again in November 2014, at which time they will apparently toss in the MMR vaccine as well. Those of you with young children have no doubt run this gauntlet in the recent past, but given how long its been since I was classified as an infant, it just seems like a heckuva lot of needles in a very short period of time.

I’ll now dispense with my trypanophobic whinings and move on to the part where I try to make some sense out of this posting’s title. I have not touched on the subject of corticosteroids in some time, so why not take this opportunity to somehow employ them to pervert one of our most treasured holiday carols? As most of you are aware from my earlier missives, the only practical and effective way to restrain and control the symptoms of chronic graft vs. host disease (cGVHD) is to administer a whopping dose of prednisone, and then hope that the symptoms don’t return once the dose is tapered off.

Since prednisone is not a cure for cGVHD, it comes down to a “cross your fingers” scenario that said symptoms remain at bay; otherwise one must immediately revert to the original dose (in my case, 80mg/day, or 1mg/kg of body weight) as soon as the taper is completed.

Now, this taper thing is kind of tricky. Turns out that the body’s adrenal glands–in addition to cranking out adrenalin on request–manufacture approximately 5mg of their own “prednisone” in the form of cortisol, a similar glucocorticoid. Since this paltry 5mg dose is dwarfed by the 80mg I’ve been ingesting from last December through May of this year, and again from August through the present, my body, as would anyone’s, shut down its own internal cortisol production during that first steroid regimen, and closed up shop again this time around, reasoning that there’s little point in cranking out a meagre 5mg when the body is being flooded with 80mg each and every day.

That’s all well and fine, but if one were to abruptly halt the prednisone regimen–a tempting prospect given the myriad of side effects that accompany such a high dose–the adrenal glands are not capable of returning to their own steroid production levels without some advance notice; rather, they need to be eased into their pre-prednisone production levels gradually. Otherwise, the adrenals might never awaken, and therefore be incapable of producing their own cortisol as well as other stress response hormones.

In fact, the adrenals are at some risk of being permanently compromised whenever a whole bunch of steroids are introduced. Hence, the rationale for tapering even the briefest regimen of prednisone. For cGVHD patients and others who are on relatively massive doses, the taper typically takes place over the course of a few months–80mg/day to 70mg/day for a week or two, then 70mg to 60mg for a few more weeks, and so on until the dose is finally reduced to zero.

There is, however, another approach to this tapering process; namely, the alternate-day method, wherein the actual tapering begins much sooner than with the standard protocol, but instead of dropping from 80mg to 70mg every day, the dose decreases to 70mg every other day, and then moves fairly quickly down to 0mg on that alternate day only.

So when one arrives at the 80mg on day one/0mg on day two point, the dose is already tapered down to 40mg when you do the math. The side effects are potentially minimized as well, although I’m still waiting for my chipmunk cheeks and calcium-challenged spinal column to avail themselves of this alleged respite. In any case, this alternate day option seems like it could be a winner for those who dream of a corticosteroid-free existence. There is a potential downside to this method, of course, that being the “roller coaster” effect one is subject to when zig-zagging between 80mg and 0mg doses over the course of 24 hrs.

I lobbied my docs for the alternate-day taper this time around, and for me, while the ups and downs are certainly noticeable, I have not found them to be unmanageable. The 80mg days find me juiced up and somewhat manic, while the “zero days” are characterized by a relatively normal feeling in the AM, followed by what can best be described as “running out of gas” by the early afternoon. Next day, it’s back to 80mg in the AM and the cycle begins again.

For now, it’s worth it to have the opportunity to get off the prednisone as quickly as possible and to know that I’m already down to 40mg/day. Coincidentally enough, my first “zero day” was Tuesday, Dec. 3rd, which dovetails perfectly with this blog posting, because if you are inclined to do just a little more math you will discover that the twelfth zero day of my taper just happens to fall on Christmas Day.

So let’s bring this posting full circle by setting the taper to music. I’ll jump right to day twelve to save electrons–and also to give you more time to read my second post of the day. I’ve found this to be surprisingly melodic, but please, folks, don’t feel that you absolutely must sing it out loud–it works just as well if you hum the tune and just read the lyrics to yourself. On the other hand, if there are others present in the room while you are reading this, why not all join in and give it full voice?

The more perceptive viewers among you may feel compelled to point out that precisely six zero days are included in my hastily-revised lyrics, as opposed to the twelve promised by virtue of this post’s title. In my defense, I opted to employ a not-inconsiderable degree of artistic license in order to maintain your interest through the entire stanza.

And now, without further ado:

The Twelve Zero Days of Christmas (Day 12)

On the twelfth day of Christmas
My docs prescribed to me
A normal dose of eighty
Zero on the next day
Then right back to eighty
Followed up by zero
Once again, take eighty
Drop back down to zero
Eighty, then revert to

Zero
mil-
li-
grams…

Eighty milligrams
No milligrams
Eighty milligrams
And a whopping dose
Of zero milligrams

Next: The Gift of the Mac Guy