To Know, or Not Know, of Complications Beforehand: That is the Question
Last updated: June 2020
After I had a cesarean section, I thought that in childbirth class they could have spent more time discussing the procedure. I remember it as an afterthought. “Oh, this might happen, and here’s what it might look like.”
They didn’t discuss the incredible pain of having an incision across your midsection, for starters. My father said that after heart surgery his incision didn’t hurt that much, because it went straight down his sternum, as opposed to the C-section incision across muscles that you use. They also didn’t say that postpartum depression could be magnified by the need to take opioids, even if only briefly. In the end, though, it has all evened out, because after three Caesareans, I have three wonderful grown-up children.
I’m bringing this up because it has a parallel to the innocence with which I went into stem cell transplant land.
Not knowing about the complications of a stem cell transplant
I didn’t get much information on the complications that could ensue after a bone marrow transplant – more commonly called a stem cell transplant these days – and maybe I would have liked to know.
But on the other hand, maybe I would have been more freaked out if I had known that I would develop graft-versus-host disease, mostly in my skin and in my gut, and that I would need to go on prednisone to tamp down high liver enzymes and the GVHD. I probably wouldn’t have wanted to know that my original higher dose of 40mg a day would give me chipmunk-face and make my legs swell up. Or that even my current lower dose of 1mg daily I would need to take drugs to protect an immune system that prednisone compromises. Or that the transplant and the prednisone would make me more susceptible to skin cancer, which I have discussed over at SkinCancer.net.
My current status, 16 years after my diagnosis, doesn’t line up neatly with the children all grown up and my incision a faint scar. (They used the same one three times. Egads!) I can’t exactly forget that the C-sections happened, but they don’t bother me anymore.
Learning to cope with the side effects
In contrast, everything that happened after my transplant is a constant presence in my life. Still, despite chronic health conditions, I am able to live a full and active life.
To tell the truth, some people say I never slow down. (I have to work on that!) I play tennis several times a week and also run, albeit more slowly and for shorter distances than before. While the old me was likely to look for 10K races, I’m more likely to sign up for a 5K run. I can go out and run three and a half miles and feel pretty decent, which is a lot better than, after my last transplant, having trouble even turning over in my hospital bed.
So, like most everything else in life, it is a little of this, a little of that, and not all of one thing.
How do you feel about your support system?