Of course! Dan and I are very close, and I’m glad to be able to help facilitate communication efforts, since Mike’s already covering the phone line. (Mike has been a fantastic guy behind the scenes in all of this. Zed and Manon have similarly also been involved, we have a little chat with us four to coordinate contact.)
I got to speak with Dan a little more this evening directly, and he’s since probably laid down to get some sleep- but from the sounds of it, he was sort of downplaying his symptoms earlier with Mike. The bloodthinners he’s on come with the same effects as my hemophilia, essentially: which means he’s also been experiencing instances of waking up with his face congealed to his pillow from the aftermath of a gory nosebleed while sleeping, vomiting half congealed swallowed blood that’s jellied in texture, stomach upset and nausea from said blood, bleeding gums, eyes, and his ears, in addition to his nose.
His doctor has been kept informed of his symptoms. There’s not much to be done about them, unfortunately. He was thankful for some quality of life tips I gave him from my own first hand experience of these sorts of hemorrhages: mostly to manage the griminess and soothe some of the pain that can accompany these symptoms, (like a cold compress over the eyes for the stinging, avoiding screen time and straining them, wet wipes for the middle of the night,) how to deal with the accompanying severe light headedness (such as safer postures to puke from, how to keep fluid intake up with reminders), and how to get around mobility issues and feeling clean after bleeds (a little ‘go kit’ beside the bed, with wipes, snacks and water, another container to swish blood out into), and how to go about addressing a more severe nosebleed (constricting the blood vessels with cold, let the blood out and don’t swallow, as blood is a stomach irritant, etc).
His sleep schedule has been totally fucked by the symptoms, which is very understandable: the extreme fatigue and dizziness that comes with hemorrhaging is awful to live with. He got up at like, 4PM today, but he’s spent a lot of his time lately absolutely soaked in blood: he described a pretty grisly scene of a nosebleed that resulted in the tub, wheelchair, floors, and so on slathered. So he’s been pretty tired, understandably, and mostly just curled up in a ball and resting, listening to podcasts to keep his sanity while drowsing off. Dan always has problems remembering to eat/drink appropriately, (he often forgot even before the accident, which is why I sometimes prompt the Neo-Interactives and Camp Meows with dinner checks- he’s the kind of person who forgets how thirsty they are until they start drinking,) and hydration has been a bit of an issue with the blood loss: though he promised he was getting some water while we were speaking.
He hasn’t bled enough to hit shock symptoms, from the sounds of it- and hasn’t mentioned being particularly cold or shaky, just mostly exhausted and dizzy. I told him to reach out to me if anything else happened and I’d see if I could come up with some more tips to address issues that pop up, since we managed to troubleshoot what he should do in the event of another nosebleed and vomiting session, and we sent him off to presumed bed with warm wishes from the Camp Meows.
It’s all been a little frustrating: I wish there was more we could do about it- it’s no fun hemorrhaging. But I am glad that I was able to help a little bit, with information from my own lived experiences, and that he seemed to be a little happier from us talking with him. Hopefully tapering off of the anticoagulants go well, though even if he’s on them for life in the event of another clot forming- he won’t be going through the process alone, and he knows that I’ll be there for him, to commiserate and share advice, as I deal with my own hemophilia and coagulation factor dysfunction. I think it helped to hear that, maybe. I hope so. We all love him very much, and care for him deeply. It was good to hear from him.
