Posted by Becky
Leif is doing well in the grand scheme of things; no infections, and today his neutrophil count is above zero again for the first time in four days. His platelet count also is up, from 21 to 34, without any transfusions.
He is not feeling great, though. He is still fighting the headache that started last week. It hasn't gone up the pain scale to 10 out of 10 again, because he's figured out that a dose of IV Dilaudid when it starts ramping up will keep it from getting out of hand. But, he still has the jaw pain that started after the first headache. He hasn't tapered the painkillers down as much as he'd hoped to by now. It is possible that the painkillers themselves are contributing to the muscle tension that is clearly contributing to the headache. He has severe tension in his neck and shoulders; I'm doing what I can with backrubs, and he's using tennis balls, heat, and stretching to try to soften up those muscles as much as he can.
The doctors are going to order an MRI to check again for causes on the inside of his head. This kind of pain is not typical for transplant patients, so they are having a lot of discussion about what might be causing it and how to treat it. His nurse today is also pondering the question, and she put together a pain management strategy with Leif to try to get ahead of the pain, rather than chasing it. Headaches are hard to diagnose and treat if there's no obvious cause for them, and this will need to be under control before they can send Leif home.
He also has neuropathy (a burning sensation) in his lower legs and feet, some numbness on one side of his mouth (a known ciclosporin side effect), sore abdominal muscles from throwing up, pain in his bones and leg muscles, and his usual spleen pain. The only spot that doesn't hurt is his butt, which continues to hold its own against infection. Except for his head, none of this pain is very bad on its own, but cumulatively, it's giving him a rough time. He's been going for at least one walk a day regardless. Keeping active is one of the most important things he can do right now, along with continuing to eat well, so that's where he's putting his limited energy.
The criteria for sending Leif home are that his neutrophils need to be up into the target range, all his IV medications will need to be switched to pills and of course his pain needs to be under control. That could happen as soon as the end of this week! He's entering the time frame when he's at highest risk of veno-occlusive (liver) disease, and he'll be at risk of acute Graft-vs-Host Disease starting soon and for the next three months. The team will continue monitoring him closely for any symptoms until Day 100; but they don't need to keep him in the hospital to do so, although they might need to re-admit him if anything flares up. As the doctors have warned us, this is a marathon, not a sprint.
Leif is fortifying his spirits with good food (lentil stew, greens, pizza delivery), good books (Moss Farm by Van Reid, Sunlight and Shadow by Mark Helprin), and his new UFO-style remote-controlled quadcopter, which can do loop-de-loops.
Leif is doing well in the grand scheme of things; no infections, and today his neutrophil count is above zero again for the first time in four days. His platelet count also is up, from 21 to 34, without any transfusions.
He is not feeling great, though. He is still fighting the headache that started last week. It hasn't gone up the pain scale to 10 out of 10 again, because he's figured out that a dose of IV Dilaudid when it starts ramping up will keep it from getting out of hand. But, he still has the jaw pain that started after the first headache. He hasn't tapered the painkillers down as much as he'd hoped to by now. It is possible that the painkillers themselves are contributing to the muscle tension that is clearly contributing to the headache. He has severe tension in his neck and shoulders; I'm doing what I can with backrubs, and he's using tennis balls, heat, and stretching to try to soften up those muscles as much as he can.
The doctors are going to order an MRI to check again for causes on the inside of his head. This kind of pain is not typical for transplant patients, so they are having a lot of discussion about what might be causing it and how to treat it. His nurse today is also pondering the question, and she put together a pain management strategy with Leif to try to get ahead of the pain, rather than chasing it. Headaches are hard to diagnose and treat if there's no obvious cause for them, and this will need to be under control before they can send Leif home.
He also has neuropathy (a burning sensation) in his lower legs and feet, some numbness on one side of his mouth (a known ciclosporin side effect), sore abdominal muscles from throwing up, pain in his bones and leg muscles, and his usual spleen pain. The only spot that doesn't hurt is his butt, which continues to hold its own against infection. Except for his head, none of this pain is very bad on its own, but cumulatively, it's giving him a rough time. He's been going for at least one walk a day regardless. Keeping active is one of the most important things he can do right now, along with continuing to eat well, so that's where he's putting his limited energy.
The criteria for sending Leif home are that his neutrophils need to be up into the target range, all his IV medications will need to be switched to pills and of course his pain needs to be under control. That could happen as soon as the end of this week! He's entering the time frame when he's at highest risk of veno-occlusive (liver) disease, and he'll be at risk of acute Graft-vs-Host Disease starting soon and for the next three months. The team will continue monitoring him closely for any symptoms until Day 100; but they don't need to keep him in the hospital to do so, although they might need to re-admit him if anything flares up. As the doctors have warned us, this is a marathon, not a sprint.
Leif is fortifying his spirits with good food (lentil stew, greens, pizza delivery), good books (Moss Farm by Van Reid, Sunlight and Shadow by Mark Helprin), and his new UFO-style remote-controlled quadcopter, which can do loop-de-loops.
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