Sunday, March 29, 2009

In all the excitement of last week in relating the news of our early release, I've yet to mention the most fun aspect of the week, which is that my niece from Midland and my nephew from Chicago flew in to pay us a visit. They got here Tuesday afternoon and stayed until lunchtime Thursday. We had a great visit with them, and Wednesday we went out to the Black Labrador (a fairly decent imitation of an English pub) for lunch and then went to Memorial Park and took a short walk on one of the trails in the arboretum there. Thanks for the tip about that place, Joel. And thanks again for the visit, Chris and Lisa.

This is for our friends who have asked about what our post-release life will be like. Before our visitors arrived Tuesday we attended a mandatory discharge class at MDACC that morning. It lasted about two and a half hours and was taught by a survivorship progam nurse who's been in that field for 18 years. The class was an interesting mix of encouragement and scare tactics. She emphasized that most transplant patients do very well, but that there are still precautions to be taken and habits that have to adopted. Many of these we knew about, but a few things came as a surprise. For example, according to her I have to wear sunblock of at least SPF 45 every day for the rest of my life. Apparently excess sun can trigger graft versus host disease (GVHD). To prevent infection we were given a list of dos and don'ts, including washing hands regularly, staying out of crowds, encouraging friends and family to get flu shots, staying away from sick folks, eating well-cooked foods, and eating at familiar restaurants. Trudy's and Angie's here we come! I'm to stay away from children who've had live-virus vaccinations. In January 2010 I'm to begin retaking all the childhood immunizations. I'm to immediately report a fever 100.5 to my doc, even if it's 3 in the morning. She said there's a common phenomenon called "chemo brain," which includes difficulty remembering things and other mental problems. I think I already have that, but I can't remember. One of her Power Point panels warned that some days I may be downright cranky. Yeah, that'll be different. Another one said to plan rest periods during the day. (Advance warning to my co-workers -- I'll probably start feeling nappish whenever a big folder hits the work tray.) No yardwork or gardening for a year -- mold, fungus, and other microbes in the soil and on plants. I won't miss mowing, but I will miss gardening. We're to inspect my skin and mouth for signs of GVHD every day for the rest of my life. I'm to do a "joint check" every day for stiff joints. We can keep our kitties, but litterboxes are a no-no, which is not a problem for us anyway. No kitties in the bed at night. Sorry Boogie.
Those are the main points of what we learned. In re-reading this posting, I realize that it's pretty disjointed. I don't feel like any rewriting, so if anyone has any questions, please feel free to ask.

1 comment:

  1. Quite the list of precautions, but they'll eventually become second nature to you all as well as to your friends and family. We're just thankful that there are some tried and true strategies to assure your continued survival, and that you and Elbee will be home soon. What a long road it's been.

    One thing you didn't mention however is, how second and third hand smoke will affect your health during this recovery period? Not all smokers adhere to Austin's 15ft from the door policy at restaurants,and most smokers have the carcinogenic third hand residue all over their clothing... just how wide a path will you have to take to avoid this?

    Not that we're planning to take you all to a Hookah lounge to celebrate or anything like that, but shall we get you a portable fire extinguisher as a homecoming gift? ;>)

    Seriously, just how toxic is this to you in particular, and for how long?

    Thanks,
    PT N JC

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