Posted by Becky
I was mistaken about Leif's steroids; Dr. Connelly has left them at 30 mg, which was the amount they tapered down to a few days ago. She thinks there is more going on with Leif's liver than GVHD. She has a call in to Dr. Meehan to discuss this further. Specifically, his ALK and ALT levels have come down, but his bilirubin is going up. That's not typically a sign of GVHD. It could be a medication effect, or it could be caused by blockage of a bile duct (e.g. by a swollen lymph node), in which case it is possible to put a stent in. She has ordered a CT scan for tomorrow, which will give her a good look at what might be going on in his liver and also a look at the fluid around his lungs, which appears to be continuing to diminish. They've changed his antibiotics from every 8 hours to every 12 hours to see if that helps.
She was pleased to see that Leif's platelets have come up slightly, from less than 5 to 7. Although patients typically get a platelet transfusion when they are below 10, if one is not actively bleeding, it's not clear that platelet levels in this range are harmful. They are given as a preventative measure. Due to the cannula (little plastic doohickey) that delivers supplemental oxygen to his nose, plus the low platelets, Leif's had some minor nose bleeding. That's pretty common, and not the kind of bleeding they're worried about. The oxygen is bubbling through water to make it gentler on his nose, but it's still drying to have oxygen blowing up your nose 24/7. The platelet shortage is due to a recall, and is affecting all of New England. More platelets are being shipped in from around the country and should be here tomorrow.
Let's hear it for blood donors everywhere. Let's also hear it for Eliza, who generously changed her Sunday plans and is bringing Leif's cyclosporin (and my Kindle) down to us this afternoon. I am grateful that there are so many people who love Leif and who are helping us through this in ways large and small.
Otherwise, Leif has been having a quiet day resting up after seeing a lot of visitors yesterday. His pain is being controlled okay now, and mostly consists of back pain. We're using a heating pad and I've been giving him back rubs (gently, since his platelets are low). I'm also having a quiet day resting up, after a quiet day resting up yesterday.
I was mistaken about Leif's steroids; Dr. Connelly has left them at 30 mg, which was the amount they tapered down to a few days ago. She thinks there is more going on with Leif's liver than GVHD. She has a call in to Dr. Meehan to discuss this further. Specifically, his ALK and ALT levels have come down, but his bilirubin is going up. That's not typically a sign of GVHD. It could be a medication effect, or it could be caused by blockage of a bile duct (e.g. by a swollen lymph node), in which case it is possible to put a stent in. She has ordered a CT scan for tomorrow, which will give her a good look at what might be going on in his liver and also a look at the fluid around his lungs, which appears to be continuing to diminish. They've changed his antibiotics from every 8 hours to every 12 hours to see if that helps.
She was pleased to see that Leif's platelets have come up slightly, from less than 5 to 7. Although patients typically get a platelet transfusion when they are below 10, if one is not actively bleeding, it's not clear that platelet levels in this range are harmful. They are given as a preventative measure. Due to the cannula (little plastic doohickey) that delivers supplemental oxygen to his nose, plus the low platelets, Leif's had some minor nose bleeding. That's pretty common, and not the kind of bleeding they're worried about. The oxygen is bubbling through water to make it gentler on his nose, but it's still drying to have oxygen blowing up your nose 24/7. The platelet shortage is due to a recall, and is affecting all of New England. More platelets are being shipped in from around the country and should be here tomorrow.
Let's hear it for blood donors everywhere. Let's also hear it for Eliza, who generously changed her Sunday plans and is bringing Leif's cyclosporin (and my Kindle) down to us this afternoon. I am grateful that there are so many people who love Leif and who are helping us through this in ways large and small.
Otherwise, Leif has been having a quiet day resting up after seeing a lot of visitors yesterday. His pain is being controlled okay now, and mostly consists of back pain. We're using a heating pad and I've been giving him back rubs (gently, since his platelets are low). I'm also having a quiet day resting up, after a quiet day resting up yesterday.
So glad that there are more platelets on the way and that Liza was able to do the cyclosporin run. Thank-you, nation-wide, blood donors!! I'm going to try to donate tomorrow--so cool that I can donate blood in Colorado and it could potentially be shipped out to help Leif!! : )
ReplyDeleteThat's better news! Glad you are getting rest and that Leif's pain is more controlled. Hope you can get ibrutinib soon!
ReplyDeleteGlad the pleural effusion is decreasing and that the platelets are on the way up! Cheers to blood donors everywhere! I hope the BILI decides to play nice soon, too. Hang in there, guys! I'm thinking about you!
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