Nurse Heather discussed Jeff’s side effects with him and answered most of the questions I had written out so the guys wouldn’t forget anything. Interestingly, Heather thought Jeff’s face gets red due to his skin having improved with the steroids; he doesn’t bother to apply his lotion as he should because it doesn’t feel as if it needs it. She also said – horror of horrors! – that he should not eat ice cream! His glucose could go kerflooey and he needs to watch his sugar intake to avoid kidney problems while on steroids. She said he should not put sugar in his coffee - and no ice cream! She felt that is the reason he has to get up several times each night.
One of my questions was whether Jeff’s monocytes are still high because of Graft vs. Host Disease. Heather said that was likely the reason. Jeff is enjoying supple skin from the steroids and we wondered whether his nails would improve, too. Heather said that is not likely. Dr. Porter was happy to see that Jeff’s nails had shown improvement since his last visit, though. Jeff sometimes doesn’t wear any Band Aids on his fingertips. Still, the nails are thin and tend to split.
Jeff has been reporting his sense of taste is off (also a steroid side-effect) and blurry vision. Dr. Porter wants him to have an eye exam after he is off the “’roids” as Keith calls them. And Dr. Porter wants Jeff to take one less Prednisone pill per day for a week, then drop another. He will stay on 90mg per day from that point until he sees Dr. Porter again in early January.
The results of the engraftment/chimerism study are still pending. They swabbed Jeff’s mouth again! Dr. Porter and Heather reviewed the process for ordering the test and wondered whether they had been doing something wrong that prevented Jeff’s tests from being processed.
The Vidaza man, a fellow MDS patient, was in the office today so Jeff was able to ask him for his name (Kevin) and his phone number and email address. Kevin drives himself to the Perelman Center from his home in south Jersey whenever he feels weak. He doesn’t have to make an appointment; he just shows up and requests a blood transfusion. He has had 70 pints of blood so far. He likes to follow the news on MDS through the MDS Foundation based in Yardville, NJ: http://www.mds-foundation.org/
Prayers for Kevin would be in order.
Late in my workday, I got an email from Penn Medicine letting us know that some of Jeff’s lab results had been posted online. I checked some of his key numbers, a routine I can do quickly at this point. My heart danced when I saw his hemoglobin was 13.2, the highest it has been since transplant – really, since last fall when we began measuring it regularly. I debated calling Jeff with the news but I was busy finishing up for the day and wanted to tell him in person anyway. When I got home, I asked Keith and Jeff, “Guess whose hemoglobin was 13.2 today?” Jeff said, “Yours?” Ha!
Some, but not all, of Jeff’s liver function indicators were posted. It was fun to use the website’s graphing function to show Jeff that, through the miracle of steroids, those dramatic spikes were back down. Thank God!
This week Jeff got his truck inspected (low mileage this year!), helped set up the stable at church, worked in his shop a little, did some Christmas shopping, took Kerry and Theresa to the train station for their trip to Prague, went to PT, and otherwise made himself useful. He is feeling stronger and stronger and looks fabulous.
3 comments:
Fabulous!
Have a wonderful Christmas. You have many reasons to celebrate!
Glad to hear of the improvements. Those steriods surely do work wonders on your energy level, with lots of side effects, however. I was afraid they would tell him to stay away from sweets...
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