Hello dear reader(s)!
Happy 1st day of July for those of you that follow this particular calendar. Why is July 1st such a happy occasion? Well, the answer is clear, but only if you are either Canadian, or me.
“Are you Canadian, Josh?”
Yeah, right. When have I ever apologized for anything? (Just kidding Canadians, I love you and your hockey loving weirdness, eh?) (Okay, I’m sooory for that last apology.) (Oh, I apologize again for that.)
In honor of Canada Day, I got donuts this morning. Seriously, I did, but I’m not going to put gravy on my fries and no amount of convincing will make me do otherwise.
But this post is not about Canada Day, (the day in which our neighbors to the North celebrate their superior maple products), no, today is about ME.
I’m glad I decided to ask on your behalf. You see, my dear reader(s), it is because today, July 1st, 2015; I am officially off of prednisone after 2 years and 11 months of being on it constantly. Prednisone, for those of you unaware, is a steroid that kinda sucks because it isn’t the kind of steroid that makes you gain a shitload of muscle. Nope. It is one of the lousy steroids, where the only benefits are medically related.
We tried stopping my prednisone once before on a more aggressive taper, but my adrenal system had not kicked back into gear with that stoppage, so we decided to crawl down 1 mg over the course of 10 months and here we are. Last month I had a test showing normal adrenal function at 1mg, which would not be enough to really substitute for a working adrenal system; so we know the taper was successful.
Now, it is always good when I am able to stop taking a medication, but let me tell you what long-term prednisone use has done to me. The first issue was the edema. When I was on high doses of prednisone, I looked fatter at 140 pounds than I do currently at 215. My socks would cut off my circulation. After the doses went down somewhat, the edema subsided, but to be off altogether is a nice feeling in knowing my clothes should continue to fit me barring some other issue. Then there is the cataracts. I have cataracts on each eye, that will eventually require surgery. At 36 I was diagnosed with cataracts. Not 65, not 74, but 36. I am 37 now, but people in their 30’s should not have cataracts, it should be federal law, because I said so.
Then there is the most important bad aspect of prednisone. Immune suppression.
Even though I was on prednisone well before my transplant, for things like anti-inflammation and to assist with the Aspergillus Pneumonia I got when I was at 0 neutrophils, one of the main functions of prednisone is suppression of the immune system. By being off of it now, over the course of the next few months it should leave my system entirely…and I am hoping that my immune system finally kicks the final 40% into gear and we no longer see periods of slight neutropenia. I am also hoping over the next few months that we have a chance to see my B cells come in. If that should happen, a lot of the restrictions that I have will drop. I will be able to get vaccinated, I will be able to go into the ocean again, I will be able to eat cold deli meats, (even though Hannah and I are exploring the possibility of going vegetarian), I will be able to have soft cheeses, and most importantly, I will not need to be so scared of being around people.
Concerts, special events, parties, and even protests may soon become an option.
And if I can ever find a mental health provider, and my GI issues calm down, then the most important thing becomes a possibility. IF all of this does happen, IF getting off the prednisone does spur a major jump in my marrow cellularity, IF it all comes together as I am hoping it will…I may be able to re-enter the workforce at that point in time.
Now it isn’t guaranteed. There is a very real possibility that I will alternate between neutropenic and not for the rest of my life. There is a real possibility that my B cells will never come in, and I will be stuck in this new purgatory of living until I die. Nobody can answer that, but there is still hope.
But today, July 1st, 2015, a day which will live until tomorrow; the last artificial barrier to immune recovery is torn down, and over the next few months, we should see if the marrow cells respond to their new-found freedom and repopulate after the threat of this terrible regime has been eliminated.
With the Allied defeat of prednisone, we are hoping for a marrow baby boom, thanks to the optimistic climate in the wake of a terrible chapter in the darkest history of my marrow. The towns and cities of marrow, decimated by chemical warfare, may hopefully rise again like a phoenix from the aplasticness.
And then hopefully they don’t do something stupid years later like trying to form a single currency with my bowels.