The Last Poster Wins [v30]

[Neo Emolga]

VERY GLAD you got out of the ICU. It's high risk for catching infections there, but hopefully now that you're out of there, it won't be long until they get to the bottom of this and get you what you need to get discharged and go back home.

Good luck and all the best, Noble. :3

[Noblejanobii]

Yeah, they think they've figured out what I have and we've got a treatment plan set in place. Unfortunately, it's not the most ideal situation it could have been. It sounds like I'll be discharged by the end of the week, if not sooner, but the trade off is I'm going to be essentially home bound for the next six months-ish. It depends on how I respond to the medications and treatment.

I've contracted an extremely rare immunocompromising disease that is lifelong and of which there is no cure. I'm counting my blessings that I'm alive and that we caught this early, but at the same time, getting confirmation that my life will never be the same is a lot to take in. I have a lot to tackle in the near future, including how to handle my job and stuff. My parents and friends are here to help every step of the way as they can, but the road ahead is long, and we're just going to take it a step at a time.

[Chakramaster]

Man, like you said that's not good news at all. Can only hope it's not like they say and you only get better. It is very good that they caught it early for sure. Seriously take your time and don't rush back into things. Take it at an easy pace for sure. Hopefully you can figure out something on your job side. By home bound I guess you mean no longer in DC?

I'm sorry to hear all this Noble. I hope things will only get better for you soon. Is there a name for whatever this is you contracted?

[Neo Emolga]

No cure... yet. I wouldn't give up hope, even as bad as things seem right now. At least you're alive, but there may be medical advancements in the future that could resolve this disease in due time.

But like you said, try not to swallow all of it at once. Take things day by day, one step at a time. We're all here to support you. :3

[Noblejanobii]

No cure... yet. I wouldn't give up hope, even as bad as things seem right now. At least you're alive, but there may be medical advancements in the future that could resolve this disease in due time.

But like you said, try not to swallow all of it at once. Take things day by day, one step at a time. We're all here to support you. :3

Yeah I'm just trying to take stuff in stride. The treatment plan they have me on is the best they have atm and seems to be pretty successful so even though it's not a cure, it's not like my life is over. It's just something I'll have to deal with for the rest of my life, assuming no cure is ever made ofc. My mom is more stressed out about it than I am. And like there is reason to worry because my kidneys are the main things suffering right now, and if I lose a kidney quite candidly I'm kinda screwed over in many ways, but it doesn't sound like that's something I have to stress over quite yet so I'm just taking it as I go.

Man, like you said that's not good news at all. Can only hope it's not like they say and you only get better. It is very good that they caught it early for sure. Seriously take your time and don't rush back into things. Take it at an easy pace for sure. Hopefully you can figure out something on your job side. By home bound I guess you mean no longer in DC?

I'm sorry to hear all this Noble. I hope things will only get better for you soon. Is there a name for whatever this is you contracted?

Nope I'll still be in DC! Homebound meaning I literally can't leave my apartment at all except for treatments/doctor visits for the next 6 months-ish. My parents are taking shifts to help take care of me since I can't even go visit the grocery store or anything. Which means I might lose my job since a component of it does require me to be in person, but obviously I can't do that if I'm not allowed to leave the house.

It's called Granulomatosis with polyangiitis, or GPA for short. You might have heard it called "Wegener's granulomatosis" which is the former name for it, but that was changed because the scientist it was named for was a Nazi. It's part of a family of disorders called "vasculitis" which is like the easiest of the names to say, haha.

[Neo Emolga]

Yeah, I feel like I've been stressing out over my Dad more than he is stressed out about himself. Glad he's home from the hospital, though, that was a bit of a scare when his pulse jumped back up to the 140s on Monday.

If your kidneys are at risk, probably means not to reach for caffeine or alcohol and instead just keep it easy with water. If I had to give up coffee and beer, well, I wouldn't be thrilled about it, but I'd live and I'm quite sure I'd cope. Though I'd have to give away my stock to friends and family so it wouldn't keep sitting there in front of me. XD

[Noblejanobii]

Yeah thankfully I was never much of an alcohol drinker anyway (I was always moreso the type that only drank when I went out with friends), so cutting that out of my diet won’t be hard. But in order to keep my kidneys healthy I have to watch my sodium, potassium, phosphorus, and protein levels, with certain regulations as to how much I can have of each. For the most part, with the way my diet is already, most of this isn’t hard, but I’ve only been home a day and the sodium one is already the most difficult.

Since I was set to move apartments the weekend I went into the hospital, my dad went and bought a bunch of food for me before we knew what was wrong, so a lot of the food in my new apartment is waaaay too high in sodium for me to safely eat even in small amounts. It’ll be easier once we’re able to clear all that out and set me up with low sodium options but the start of this new diet is gonna be rough. I also have to cut back a lot on soda, like you said, so for now to sorta help me transition, I’ve been drinking Sprite since the doctor said that’s mostly okay since it doesn’t have phosphorus in it.

I also have to be careful of how much I eat too since the steroids I’m prescribed have a side effect known as “Moon Face” which essentially just means: 1) my hunger receptors are messed up and I am hungry all the time now, and B) I gain weight at a much more accelerated rate than before, causing me to look puffy. And it’s much easier to put on the weight than lose it. So it’s just a matter of maintaining the balance.

I’ll figure it out in the long run but at the start this is going to be rough. I’m literally having to calorie count my sodium hahaha.

[Neo Emolga]

It's hard when so dang many foods have insanely high sodium counts. I swear I can't find a decent brand of soup that doesn't have an absurdly high amount of sodium. The "healthiest" one I've found is still ticking up there at 50% of your daily allotment of sodium.

Crazy, and I used to think soup was relatively healthy and nutritious with vegetables and proteins.

[Noblejanobii]

Yeah EVERYTHING has so much sodium in it. It's wild. Pasta and rice are safe thankfully but even just including cheese or butter in them can take up a large amount of sodium. It's nuts!!

[Chakramaster]

I've been trying to watch what I eat more, but it's tough. Tough without costing an arm and a leg really...