

Posted: 9/25/2023 10:06:45 AM EST
They just wheeled my wife away.
This has been a long time coming. Shortly after we got married about 15 years ago, her health started to fluctuate. Insomnia. Panic attacks. Weight issues started even though she cut out sugar and most carbs years ago. Liver problems. We miscarried, a lot of times, before our daughter made it through. After, though, she was a full-blown diabetic. She journaled all of her food, stuck with the meds and programs the doctor put her on. Things only got worse. Doctor started to act like she must be lying, eating like shit, etc. I watched as she started to have blood sugar spikes even after a fully keto meal. Finally did some research on our own. Symptoms were a match for Cushing's. Doctor was skeptical at first, but ordered some tests. Came back positive, which had him suddenly very worried and eager to get her to a specialist. Finding an endocrinologist was like pulling teeth - most basically hang up once they hear a patient is diabetic, since they assume that's the whole issue. Finally found one. Two more rounds of tests and an MRI. Confirmed it as Cushing's disease, rather than Cushing's syndrome - meaning there's a 10mm mass on her pituitary pumping out ACTH, telling her adrenals to pump cortisol night and day. Her last levels were at 7 times the normal human "high" cortisol level. So right about now they're putting her under, prepping to go up her nose and cut away this thing on her brain. If all goes well, her cortisol will crash in a few hours... which will likely nearly kill (but they have to verify it hits zero before they put her on drugs to make sure they got everything). Then it's going to be years of monitoring and hopefully weaning her off of the drugs as her pituitary slowly wakes back up and makes ACTH on its own and normal levels. If things don't go well... It's not going to be pretty. I don't get a lot of PTO at my current school job (two days a year, to be precise, on top of holidays, school breaks and summer). But I'll burn that bridge when I come to it. |
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You guys will be in my prayers, OP. Best of luck to you guys.
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Make sure to apply for FMLA, sounds like you’re gonna need it.
Prayers for you and your family. |
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damn bro - if you'd like I work for a Catholic Healthcare System - I can add you wife's name to the list the read and pray over each morning, noon and evening
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Praying for y’all and hopefully she feels better after all of this. Cortisol sucks.
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whole new meaning to "for better or for worse"...you sir..are a man among men.
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Prayers for you guys. I'm sorry you all are going through this.
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Quoted: They just wheeled my wife away. This has been a long time coming. Shortly after we got married about 15 years ago, her health started to fluctuate. Insomnia. Panic attacks. Weight issues started even though she cut out sugar and most carbs years ago. Liver problems. We miscarried, a lot of times, before our daughter made it through. After, though, she was a full-blown diabetic. She journaled all of her food, stuck with the meds and programs the doctor put her on. Things only got worse. Doctor started to act like she must be lying, eating like shit, etc. I watched as she started to have blood sugar spikes even after a fully keto meal. Finally did some research on our own. Symptoms were a match for Cushing's. Doctor was skeptical at first, but ordered some tests. Came back positive, which had him suddenly very worried and eager to get her to a specialist. Finding an endocrinologist was like pulling teeth - most basically hang up once they hear a patient is diabetic, since they assume that's the whole issue. Finally found one. Two more rounds of tests and an MRI. Confirmed it as Cushing's disease, rather than Cushing's syndrome - meaning there's a 10mm mass on her pituitary pumping out ACTH, telling her adrenals to pump cortisol night and day. Her last levels were at 7 times the normal human "high" cortisol level. So right about now they're putting her under, prepping to go up her nose and cut away this thing on her brain. If all goes well, her cortisol will crash in a few hours... which will likely nearly kill (but they have to verify it hits zero before they put her on drugs to make sure they got everything). Then it's going to be years of monitoring and hopefully weaning her off of the drugs as her pituitary slowly wakes back up and makes ACTH on its own and normal levels. If things don't go well... It's not going to be pretty. I don't get a lot of PTO at my current school job (two days a year, to be precise, on top of holidays, school breaks and summer). But I'll burn that bridge when I come to it. View Quote Good luck and prayer’s sent. It’s a relatively non-invasive surgery compared to cutting open the skull. Unfortunately, these days, you have to advocate for yourself as the medical system is in shambles! Bravo for figuring this out yourself! |
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Wow, tough journey. Sounds like it’s about to become easier going.
Prayers your way. |
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Tag to follow. Sending prayers your way for your wife and family, OP.
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Prayers sent, may God bless you both with a speedy recovery.
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I am praying for God to intercede on y'all's behalf, Vangandr. Keep us updated.
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I’m not the praying type but I do have a wife with cancer so I understand your struggle. Best of luck to you and yours bro.
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Quoted: Make sure to apply for FMLA, sounds like you’re gonna need it. Prayers for you and your family. View Quote My wife has it lined up at her work already, but that said she's got 3 weeks of vacation to burn through first and can work from home indefinitely. They say if she makes it through, she should be able to care for herself pretty much from the moment we come home. It's just the cortisol crash that's the big worry (and then paying for everything after, but I'm not going to think about that right now) |
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It's going to be okay.
Our neighbor went through this and after the transsphenoidal surgery, he said the first few weeks of recovery were rough but it gets better. However, the pituitary often doesn't restart so he has to take all the hormone medications for the rest of his life. |
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Quoted: My wife has it lined up at her work already, but that said she's got 3 weeks of vacation to burn through first and can work from home indefinitely. They say if she makes it through, she should be able to care for herself pretty much from the moment we come home. It's just the cortisol crash that's the big worry (and then paying for everything after, but I'm not going to think about that right now) View Quote View All Quotes View All Quotes Quoted: Quoted: Make sure to apply for FMLA, sounds like you’re gonna need it. Prayers for you and your family. My wife has it lined up at her work already, but that said she's got 3 weeks of vacation to burn through first and can work from home indefinitely. They say if she makes it through, she should be able to care for herself pretty much from the moment we come home. It's just the cortisol crash that's the big worry (and then paying for everything after, but I'm not going to think about that right now) Don’t worry too much about the cortisol issue as long as they monitor levels closely. This will likely cure her diabetes! |
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Quoted: Don’t worry too much about the cortisol issue as long as they monitor levels closely. This will likely cure her diabetes! View Quote Yeah, I'll trade cortisol meds for insulin and blood-sugar tracking any day. She's just been so weak I worry the cortisol crash might not be something she can make it through. But it's a "devil and the deep blue sea" moment - the mass will kill her, so better swim. |
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Praying for your wife and a smooth recovery and hoping that you all get the support you need through this.
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