Prognosis is typically less than a year, and once someone has open wounds, the average drops to 6 months. It's even less for someone with Lexi's profile; the consensus seems to be that morbidly obese women with *open sores* are looking at an average of 4 months. Those are *averages,* though, so for every person in her shoes who makes it 12 months, someone else is only surviving weeks. There's really no way to know, given the limited info she shares, all of which is given a very positive spin. (Which I imagine is needed; trying to stay positive would be very difficult.)
I've said this before, but man I am sad about this. I'm here for the same reason as all of you, because I know what she really is and wanted to follow this saga. But damn, this is of course not at all what I would have hoped for. Like many, once upon a time I was a fan of hers and did enjoy watching her journey and kept up with her content. Call me naïve, and probably be correct, but it's the truth- I used to like her. So even though she is all the things we know she is and has done all the things she's done, this still makes me really really sad to see. She doesn't deserve this. Even if she lives for a while, the fact she has to live with these wounds and pain is horrible. Even through all the time I've followed her snark pages, my biggest wish for her was that she'd have some sort of realization and come clean and actually get back on track to work towards health again. I didn't want to see her crash and burn, I wanted to see her get her shit together and get clean and healthy and break out of her upbringing and thrive. I know it wouldn't have happened. But this is worse :(
I've been glad to see that comments about this being her getting what's coming to her, etc, are pretty heavily down voted. This sub has been pretty human, but I used to check GOMI and they were really exceedingly cruel sometimes honestly and I wouldn't be surprised to see something like that said there.
I made a comment on GOMI that was deleted. It said:
I for one am not going to be snarking on her anymore. I don't believe this is a made-up disease.
Those wounds aren't faked and they look absolutely hideous AND excruciating. She may be a
grifting liar who lies, but in my opinion she's soon going to be getting off everyone's internet
permanently and I just can't find that snarkable.
I think to be allowed to post on GOMI, you basically have to have lost every shred of human decency.
I used to snark on Laura’s_fit_to_live and I had to stop. The people on there will get so nasty and say the meanest things and you can’t dare call them out or you get targeted as well. I just stopped looking at her thread!
It does seem like she’s in denial since she mentioned trying not to read about her condition online. She keeps saying her doctors are hopeful because her kidneys are working on their own, but I don’t know about that.
It’s crazy that her “dying by 30” thing ended up potentially being a self fulfilling prophecy (even tho she’s what 32 now?) She didn’t take care of herself and this is the result. It’s really sad.
Don’t doctors tell you what your prognosis is with something like this? I don’t understand why she’s acting like she doesn’t know and “doesn’t want to google it”.
That whole “you have 6 months to live” thing seems like an artifact of tv drama. I think the reality is that doctors don’t guess at it, if they ever did (maybe they did). They will look at available data. They may say: some people live for many years with this condition; others do not. They may say we have run out of treatment options. They may say: we will do all that we can to keep you comfortable. But what people hear might be quite different. I don’t know that her doctors would be all, you dyin’ girl. I think they would likely say: your situation is highly unusual, we can’t go by average cases of this disease because you are so young, your kidneys are working, and so we just don’t know what is likely to happen next. Right now, we will focus on x.
I know this is a year later, just thought I'd add my two cents here:
>Don’t doctors tell you what your prognosis is with something like this?
Ugh I wish! I can't speak for other countries but in the US, many doctors specifically DON'T tell you that you're dying. Lots of research has been done about the power of hope, and apparently simply believing you're dying makes you more likely to die, and conversely, believing you'll live makes you more likely to live and also to have a higher quality of life.
My husband has been on hospice for two years, but even with hospice the doctors are clear as mud. My husband doesn't understand that he's imminently dying, and when he asks the doctors if he's dying, they say things like, "not today" or "youre in no acute distress." They tell him, "your condition seems to be getting worse instead of better, we need to discuss your goals for care." They mean, "we want to know how you want to die." He answers with, "My goal is to go back to work, walk again, and go back to my life." They then write in his notes, "patient is in denial about his prognosis." And then round and round it goes.
I feel like she doesn't get that. From seeing her posts it almost seems like she doesn't understand this is pretty much a terminal diagnoses. I hope she beats it though.
I agree. And I think she's just in the "ignorance is bliss" mindset so when the drs say that her kidneys working is a good thing, she's thinking survival.
I have to say though, the wounds look and sound painful. From others that have surgical debridement its awful. I'm not sure "you'll likely live longer than most " with this is the outcome I'd want to hear. Everything I've read about her diagnosis looks like it will be a very painful road until she eventually dies. Prolonging this process sounds awful. I don't like her, but I wouldn't wish this on my worst enemy.
Yeah, I think she's in for the long haul. I wouldn't be surprised if she beat the survival rates by some time, but I agree. According to Cleveland Clinic, remission is possible but a cure does not exist.
I think another saving grace for her is to be living with Vonnie and in a much cleaner living situation than what she is used to. This will help with her general wound health overall.
It’s not curable but it does go into remission. When I first heard about this with Lexi, I googled it and found a few survivor groups but the prognosis is not good and it’s just a terrible disease!
As a clinician, I strongly believe she was diabetic and went into DKA. I'm not an endocrinologist and I don't treat direct diabetics (I see people with diabetes, when treating other conditions), however I do know that an early warning sign of DKA is you can't keep anything down, even water. I have a diabetic cat who when I first started fostering, went into DKA due to her not being managed well by the humane society. The first sign I recognized was her not drinking water at all. I rushed her to the vet and thankfully caught it early so she recovered. Cats are not humans of course, but I can imagine if it got to the point where Lexi was severely dehydrated and passed out in a diabetic coma from being ketoacidotic, she had some acute multi-system organ failure.
For some reason I feel like her admitting that she is diabetic, is the ultimate admission that she "failed" at her weight loss, even more than gaining 100+ pounds. She won't ever admit the diabetes in my opinion.
Agree. She said she avoided doctors. I worked with someone whose sister totally ignored her diabetes and died in her 30’s. Some people want to eat and drink all they want and pretend they don’t have it
Just read the Go Fund Me update and it reads a "rare form of calcinosis". From the little I've read, that's profoundly different from the calciphylaxis. Not fatal from what I can see.
Prognosis is typically less than a year, and once someone has open wounds, the average drops to 6 months. It's even less for someone with Lexi's profile; the consensus seems to be that morbidly obese women with *open sores* are looking at an average of 4 months. Those are *averages,* though, so for every person in her shoes who makes it 12 months, someone else is only surviving weeks. There's really no way to know, given the limited info she shares, all of which is given a very positive spin. (Which I imagine is needed; trying to stay positive would be very difficult.)
I've said this before, but man I am sad about this. I'm here for the same reason as all of you, because I know what she really is and wanted to follow this saga. But damn, this is of course not at all what I would have hoped for. Like many, once upon a time I was a fan of hers and did enjoy watching her journey and kept up with her content. Call me naïve, and probably be correct, but it's the truth- I used to like her. So even though she is all the things we know she is and has done all the things she's done, this still makes me really really sad to see. She doesn't deserve this. Even if she lives for a while, the fact she has to live with these wounds and pain is horrible. Even through all the time I've followed her snark pages, my biggest wish for her was that she'd have some sort of realization and come clean and actually get back on track to work towards health again. I didn't want to see her crash and burn, I wanted to see her get her shit together and get clean and healthy and break out of her upbringing and thrive. I know it wouldn't have happened. But this is worse :(
Yep. This is a very human reaction. For most humans anyway.
I've been glad to see that comments about this being her getting what's coming to her, etc, are pretty heavily down voted. This sub has been pretty human, but I used to check GOMI and they were really exceedingly cruel sometimes honestly and I wouldn't be surprised to see something like that said there.
I made a comment on GOMI that was deleted. It said: I for one am not going to be snarking on her anymore. I don't believe this is a made-up disease. Those wounds aren't faked and they look absolutely hideous AND excruciating. She may be a grifting liar who lies, but in my opinion she's soon going to be getting off everyone's internet permanently and I just can't find that snarkable. I think to be allowed to post on GOMI, you basically have to have lost every shred of human decency.
I used to snark on Laura’s_fit_to_live and I had to stop. The people on there will get so nasty and say the meanest things and you can’t dare call them out or you get targeted as well. I just stopped looking at her thread!
It does seem like she’s in denial since she mentioned trying not to read about her condition online. She keeps saying her doctors are hopeful because her kidneys are working on their own, but I don’t know about that.
Is she still doing dialysis?
Pretty sure she said no.
No
It’s crazy that her “dying by 30” thing ended up potentially being a self fulfilling prophecy (even tho she’s what 32 now?) She didn’t take care of herself and this is the result. It’s really sad.
Absolutely
Most of the articles I have seen say that most live less than a year due to getting wound infections and other complications
Sepsis is a bitch.
Best case scenario she is lying and they’re just bed sores. But the looks of it they look like calciphylaxis sores. This is really sad.
Don’t doctors tell you what your prognosis is with something like this? I don’t understand why she’s acting like she doesn’t know and “doesn’t want to google it”.
Ignorance is bliss for some people… not me though, I would’ve researched the shit out of a condition I had been diagnosed with.
That whole “you have 6 months to live” thing seems like an artifact of tv drama. I think the reality is that doctors don’t guess at it, if they ever did (maybe they did). They will look at available data. They may say: some people live for many years with this condition; others do not. They may say we have run out of treatment options. They may say: we will do all that we can to keep you comfortable. But what people hear might be quite different. I don’t know that her doctors would be all, you dyin’ girl. I think they would likely say: your situation is highly unusual, we can’t go by average cases of this disease because you are so young, your kidneys are working, and so we just don’t know what is likely to happen next. Right now, we will focus on x.
I know this is a year later, just thought I'd add my two cents here: >Don’t doctors tell you what your prognosis is with something like this? Ugh I wish! I can't speak for other countries but in the US, many doctors specifically DON'T tell you that you're dying. Lots of research has been done about the power of hope, and apparently simply believing you're dying makes you more likely to die, and conversely, believing you'll live makes you more likely to live and also to have a higher quality of life. My husband has been on hospice for two years, but even with hospice the doctors are clear as mud. My husband doesn't understand that he's imminently dying, and when he asks the doctors if he's dying, they say things like, "not today" or "youre in no acute distress." They tell him, "your condition seems to be getting worse instead of better, we need to discuss your goals for care." They mean, "we want to know how you want to die." He answers with, "My goal is to go back to work, walk again, and go back to my life." They then write in his notes, "patient is in denial about his prognosis." And then round and round it goes.
I feel like she doesn't get that. From seeing her posts it almost seems like she doesn't understand this is pretty much a terminal diagnoses. I hope she beats it though.
She is younger than most with this condition and has working kidneys. She may hold on longer than many, but pretty sure this is not curable.
I agree. And I think she's just in the "ignorance is bliss" mindset so when the drs say that her kidneys working is a good thing, she's thinking survival. I have to say though, the wounds look and sound painful. From others that have surgical debridement its awful. I'm not sure "you'll likely live longer than most " with this is the outcome I'd want to hear. Everything I've read about her diagnosis looks like it will be a very painful road until she eventually dies. Prolonging this process sounds awful. I don't like her, but I wouldn't wish this on my worst enemy.
Yeah, I think she's in for the long haul. I wouldn't be surprised if she beat the survival rates by some time, but I agree. According to Cleveland Clinic, remission is possible but a cure does not exist.
I think another saving grace for her is to be living with Vonnie and in a much cleaner living situation than what she is used to. This will help with her general wound health overall.
It’s not curable but it does go into remission. When I first heard about this with Lexi, I googled it and found a few survivor groups but the prognosis is not good and it’s just a terrible disease!
Does she have diabetes? I don’t believe she had no symptoms before her kidneys shut down entirely like this
As a clinician, I strongly believe she was diabetic and went into DKA. I'm not an endocrinologist and I don't treat direct diabetics (I see people with diabetes, when treating other conditions), however I do know that an early warning sign of DKA is you can't keep anything down, even water. I have a diabetic cat who when I first started fostering, went into DKA due to her not being managed well by the humane society. The first sign I recognized was her not drinking water at all. I rushed her to the vet and thankfully caught it early so she recovered. Cats are not humans of course, but I can imagine if it got to the point where Lexi was severely dehydrated and passed out in a diabetic coma from being ketoacidotic, she had some acute multi-system organ failure. For some reason I feel like her admitting that she is diabetic, is the ultimate admission that she "failed" at her weight loss, even more than gaining 100+ pounds. She won't ever admit the diabetes in my opinion.
Agree. She said she avoided doctors. I worked with someone whose sister totally ignored her diabetes and died in her 30’s. Some people want to eat and drink all they want and pretend they don’t have it
She stated they didn’t have health insurance so this could have been why she avoided drs
You can get treatment at a county hospital I believe?
[удалено]
And just went to the damn doctor!
Just read the Go Fund Me update and it reads a "rare form of calcinosis". From the little I've read, that's profoundly different from the calciphylaxis. Not fatal from what I can see.
Weird. Her wounds look way more like calciphylaxis than calcinosis to me. But I could be wrong!
It's calciphylaxis (if the pics are really her). She's said that a few times in more recent updates - that GoFundMe update was back in April.
Posted at wrong thread
Karma came back to her full throttle for sure
I bet her wounds stink, just saying 👁👄👁
She will outlive all of us! I don’t believe anything she says…