Posted by Becky
Leif had a long day at the medical center today. We started with a 6:30 check-in to get his central line removed. He still has his port, which is under the skin, but they took out the triple line into the left side of his chest, through which he got his stem cells. That is nice, because once the hole heals up a bit, he can take showers without wrapping his chest in plastic, and we won't have to flush all the lines every day. It is also one fewer infection risk site, once it has healed.
Since Leif's had bad experiences getting these types of lines put in, he opted for sedation for this procedure (which is why we had to check in so early). The sedative worked fine this time, and he did not remember the procedure, which went well. The prep/recovery room had a great deal of craziness going on today; I'm relieved to report that Leif was not one of the patients for whom anything went pear-shaped. It's nice not to be in the cubicle full of people looking serious for once, although I definitely feel for those who are.
After that, he met with the transplant/hematology nurse practitioner and doctor. His kidney labs looked a lot better this week, thanks to his efforts to drink more fluids. His blood counts were down, likely due to the linazolid antibiotic, which suppresses bone marrow after it's been taken for a couple of weeks. His course of that finished today; his next visit, with the Infectious Disease team, confirmed that he can stop taking both of the antibiotics he was taking for his butt infection, linazolid and ciprofloxacin. He was on a whopping big dose of ciprofloxacin. We are hopeful that stopping these drugs will allow his blood counts to bounce back, and possibly reduce the amount of nausea he's been experiencing.
The doctors are somewhat concerned about this nausea, which has been constant since his transplant. That's not typical. While it doesn't appear to be GVHD, it could be, or it might be an infection. They have started the process of scheduling a visit to the gastroenterology department to investigate further. It's only due to Leif's incredible stubbornness about eating even though it's the last thing he wants to do, that he hasn't lost quite a bit of weight. As it is, I am concerned that his nutrition and fitness levels are suffering, since he hasn't been able to eat a wide variety of foods and he spends a lot of time lying down/sleeping since that helps him survive the nausea. Also, it's depressing for him to be queasy all the time, in addition to feeling fatigued and low energy.
A friend of my aunt Prue's has loaned us a Nordic Track, so he can exercise without going outside. That's been great, since he hasn't been able to maintain his body heat, and he gets unhealthily chilled when he goes for walks outside. (It's still usually below freezing here in Vermont.) He can't use the Nordic Track for long at all, but he is able to get moving on it a couple of times a day, plus doing some gentle strength training and stretching exercises.
Another thing that might help is that Leif is continuing to taper down his painkillers. Both taking narcotic painkillers and stopping them can cause nausea. In general, he is taking just an enormous number of pills twice a day, which definitely contributes to the queasiness. The fewer he can take, the better. The cyclosporin immune suppresant definitely contributes; on the days when he's needed to hold a dose since his blood levels were too high, he feels better, until the next dose. The cyclosporin is very important for him to take, though; in a few weeks, he will start to taper down the mycophenolate (CellCept) immune suppressant. After he's off that completely, he'll start tapering down the cyclosporin. So the end of taking cyclosporin is not yet in sight.
After seeing the Infectious Disease docs, Leif reported to the cancer center infusion suite, where he got a small dose of IVIG and took a nap while I ran a couple of errands. Then we finally got to go home.
Leif had a long day at the medical center today. We started with a 6:30 check-in to get his central line removed. He still has his port, which is under the skin, but they took out the triple line into the left side of his chest, through which he got his stem cells. That is nice, because once the hole heals up a bit, he can take showers without wrapping his chest in plastic, and we won't have to flush all the lines every day. It is also one fewer infection risk site, once it has healed.
Since Leif's had bad experiences getting these types of lines put in, he opted for sedation for this procedure (which is why we had to check in so early). The sedative worked fine this time, and he did not remember the procedure, which went well. The prep/recovery room had a great deal of craziness going on today; I'm relieved to report that Leif was not one of the patients for whom anything went pear-shaped. It's nice not to be in the cubicle full of people looking serious for once, although I definitely feel for those who are.
After that, he met with the transplant/hematology nurse practitioner and doctor. His kidney labs looked a lot better this week, thanks to his efforts to drink more fluids. His blood counts were down, likely due to the linazolid antibiotic, which suppresses bone marrow after it's been taken for a couple of weeks. His course of that finished today; his next visit, with the Infectious Disease team, confirmed that he can stop taking both of the antibiotics he was taking for his butt infection, linazolid and ciprofloxacin. He was on a whopping big dose of ciprofloxacin. We are hopeful that stopping these drugs will allow his blood counts to bounce back, and possibly reduce the amount of nausea he's been experiencing.
The doctors are somewhat concerned about this nausea, which has been constant since his transplant. That's not typical. While it doesn't appear to be GVHD, it could be, or it might be an infection. They have started the process of scheduling a visit to the gastroenterology department to investigate further. It's only due to Leif's incredible stubbornness about eating even though it's the last thing he wants to do, that he hasn't lost quite a bit of weight. As it is, I am concerned that his nutrition and fitness levels are suffering, since he hasn't been able to eat a wide variety of foods and he spends a lot of time lying down/sleeping since that helps him survive the nausea. Also, it's depressing for him to be queasy all the time, in addition to feeling fatigued and low energy.
A friend of my aunt Prue's has loaned us a Nordic Track, so he can exercise without going outside. That's been great, since he hasn't been able to maintain his body heat, and he gets unhealthily chilled when he goes for walks outside. (It's still usually below freezing here in Vermont.) He can't use the Nordic Track for long at all, but he is able to get moving on it a couple of times a day, plus doing some gentle strength training and stretching exercises.
Another thing that might help is that Leif is continuing to taper down his painkillers. Both taking narcotic painkillers and stopping them can cause nausea. In general, he is taking just an enormous number of pills twice a day, which definitely contributes to the queasiness. The fewer he can take, the better. The cyclosporin immune suppresant definitely contributes; on the days when he's needed to hold a dose since his blood levels were too high, he feels better, until the next dose. The cyclosporin is very important for him to take, though; in a few weeks, he will start to taper down the mycophenolate (CellCept) immune suppressant. After he's off that completely, he'll start tapering down the cyclosporin. So the end of taking cyclosporin is not yet in sight.
After seeing the Infectious Disease docs, Leif reported to the cancer center infusion suite, where he got a small dose of IVIG and took a nap while I ran a couple of errands. Then we finally got to go home.
Sounds like a pretty good report, overall. When will you know how the chimerism changeover is doing? Long day!
ReplyDeleteHi Wendy! We expect hear something about the first chimerism test in a couple of weeks.
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