hm...
I don't know what to write about, really... I'm thinking that I should start writing more, though. (Don't I always start entries with something along these lines?)
There was bunches of drama over the past month or two or many many months.
Mom has been in and out of the hospital a bunch recently, and that's been really stressful.
This one time when she went in, she was being treated for this very rare disease (HLH I think?) which usually only appears in really young children. Like, infants, I think... People with realllllly weak immune systems.
Well, Mom's immune system is weak, of course, because the liver can't just get rejected. Stifling the immune response is the only way to keep a transplanted organ from getting rejected, so there ya go. That's just how it is...
But then apparently, some horrible thing happened when she was dealing with a second or third bout of CMV (a virus most people have and go through normally, which doesn't usually affect function because of the immune system), which became a problem after the liver which she has right now was put in her (its former owner, if you will, had the disease, and Mom had never gotten it, so she was basically unprotected against it because of her lack of antibodies, as far as I can understand).
When I heard this, it was at midnight, over the phone, I was at Charlie's house, and I had only heard that she went into the hospital that day or the day before. As I talked with her, I looked up the disease, which led to me crying. Almost all the information I found out about it from Googling it told me something horrible: These cases, for the most part, end in fatality. Within months if untreated, but within 5 or so years with proper and EARLY, QUICK treatment.
At least Mom has some of the best doctors around, y'know? But I mean, I was still freaking out.
She was crying, and I was crying... And everything was just really intense, and I thought I was going to lose her, sooner rather than later.
That night, also, she explained to me that the conditions for people who usually develop the disease are dire. People who get it are either very young and vulnerable, or very, very, VERY sick. Like, people who are going to probably die because of other complications.
From everything that I've experienced with her and with my family within the past 3 years (ever since she got very apparently sick), I don't think I've ever been as scared of losing her as I was right then, a month or two ago.
Luckily, she is healthy. She's one patient who the doctors love because she is able to understand what's happening and work with them. She's not all angry about being there when she is in the hospital. She's able to work herself with everybody tending to her, and she's become extremely comfortable with (and confident in) the doctors that have been working on her case for years now.
So, here's this extremely healthy person (at least in comparison to those who contract the HLH thing, anyway), with this potentially lethal disease, but since she doesn't fit into the normal situation of the typical patient in which this thing occurs, it turned out to be not even close to being deadly.
She was put on very aggressive treatment, and recovered very well. She also has gone into the hospital since then, but only for CMV treatment, after it acted up again.
One time when she was in the hospital for the whole immune system complication HLH thing, Dad and I went down to Boston to visit. During that time she was able to get her doctor (an older British man with a wonderful accent you would just imagine the British Doctor of any movie to have) to speak with me and kind of try to explain the stuff that was going on with her. That was reassuring.
Hm... There's a bunch to say, as always, but--also, as always--I don't really have the ability or inspiration or wherewithal or energy to write it all down in here.
Plus, long entries like this probably make for long, drawn-out, possibly boring reading material...
A few more updates, summed up:
--> I have purchased a bunch of material to make macrame necklaces, anklets, bracelets, keychains, etc. to try and sell online (Etsy being the means with which I can accomplish that).
--> I've been in and out of my creative state, getting ATCs done off and on, trading online, etc.
--> My Nintendo DSi XL has become a good friend to me. Jonathan, a friend, sold me his copy of Pokemon Black after getting bored/done with it. It's awesome. :3
--> Charlie got his license. A while ago, in fact. But anyway, that means I don't have to drive him places anymore. Cool, huh?
--> My sleep schedule's fucked, hence my being up to write this all right now.
Buh. That's all for now, I guess.
There was bunches of drama over the past month or two or many many months.
Mom has been in and out of the hospital a bunch recently, and that's been really stressful.
This one time when she went in, she was being treated for this very rare disease (HLH I think?) which usually only appears in really young children. Like, infants, I think... People with realllllly weak immune systems.
Well, Mom's immune system is weak, of course, because the liver can't just get rejected. Stifling the immune response is the only way to keep a transplanted organ from getting rejected, so there ya go. That's just how it is...
But then apparently, some horrible thing happened when she was dealing with a second or third bout of CMV (a virus most people have and go through normally, which doesn't usually affect function because of the immune system), which became a problem after the liver which she has right now was put in her (its former owner, if you will, had the disease, and Mom had never gotten it, so she was basically unprotected against it because of her lack of antibodies, as far as I can understand).
When I heard this, it was at midnight, over the phone, I was at Charlie's house, and I had only heard that she went into the hospital that day or the day before. As I talked with her, I looked up the disease, which led to me crying. Almost all the information I found out about it from Googling it told me something horrible: These cases, for the most part, end in fatality. Within months if untreated, but within 5 or so years with proper and EARLY, QUICK treatment.
At least Mom has some of the best doctors around, y'know? But I mean, I was still freaking out.
She was crying, and I was crying... And everything was just really intense, and I thought I was going to lose her, sooner rather than later.
That night, also, she explained to me that the conditions for people who usually develop the disease are dire. People who get it are either very young and vulnerable, or very, very, VERY sick. Like, people who are going to probably die because of other complications.
From everything that I've experienced with her and with my family within the past 3 years (ever since she got very apparently sick), I don't think I've ever been as scared of losing her as I was right then, a month or two ago.
Luckily, she is healthy. She's one patient who the doctors love because she is able to understand what's happening and work with them. She's not all angry about being there when she is in the hospital. She's able to work herself with everybody tending to her, and she's become extremely comfortable with (and confident in) the doctors that have been working on her case for years now.
So, here's this extremely healthy person (at least in comparison to those who contract the HLH thing, anyway), with this potentially lethal disease, but since she doesn't fit into the normal situation of the typical patient in which this thing occurs, it turned out to be not even close to being deadly.
She was put on very aggressive treatment, and recovered very well. She also has gone into the hospital since then, but only for CMV treatment, after it acted up again.
One time when she was in the hospital for the whole immune system complication HLH thing, Dad and I went down to Boston to visit. During that time she was able to get her doctor (an older British man with a wonderful accent you would just imagine the British Doctor of any movie to have) to speak with me and kind of try to explain the stuff that was going on with her. That was reassuring.
Hm... There's a bunch to say, as always, but--also, as always--I don't really have the ability or inspiration or wherewithal or energy to write it all down in here.
Plus, long entries like this probably make for long, drawn-out, possibly boring reading material...
A few more updates, summed up:
--> I have purchased a bunch of material to make macrame necklaces, anklets, bracelets, keychains, etc. to try and sell online (Etsy being the means with which I can accomplish that).
--> I've been in and out of my creative state, getting ATCs done off and on, trading online, etc.
--> My Nintendo DSi XL has become a good friend to me. Jonathan, a friend, sold me his copy of Pokemon Black after getting bored/done with it. It's awesome. :3
--> Charlie got his license. A while ago, in fact. But anyway, that means I don't have to drive him places anymore. Cool, huh?
--> My sleep schedule's fucked, hence my being up to write this all right now.
Buh. That's all for now, I guess.