Original: Hello I never thought I would have to do something like this but my name is Kayla (though u might know me by Nemo) and I've developed a rare condition called Aplastic Anemia which moves quickly and is fatal. The good news is that it can be treated. The bad news is that the treatments are intensive and include chemotherapy and bone marrow transplant, all of which are very expensive. I've already reached over 6k in medical debt *after insurance*, and I am told the out-of-pocket cost is supposed to hit between 8-9k. My prescriptions are billed seperately however, and right now my at home IV antibiotics are costing me $20 a day for an unknown amount of days. Some of the other bad news is that due to my bleed risk, lack of an immune system, and the time treatments will take once the BMT process starts, I am now allowed to work altogether. The treatments will take 4-6 months at least I am told, and that's after they find a donor match. I still have rent due among other bills that I am eating up the remainder of my little savings to pay right now. Some of this money will also be going towards those bills as well. Ultimately, I know I will need more than 10k, but I also don't know that it's possible for me to reach that amount and I'm hoping I can stagger the medical bill payments to make it easier to use my own money once I'm able to work again. I would appreciate sharing this around because I'm very much in need of the funds right now. Many thanks to you all

Update as of 6/9/23:

Hello again. Over the past few days, my blood has improved. One week ago they did a second bone marrow biopsy to make sure that what I had was "true" aplastic anemia and that bone marrow transplant was the only option. The data that my specialist gathered from looking at my newer bone marrow was apparently no longer consistent with aplastic anemia. She said that the marrow had become "slightly cellular", meaning that my marrow showed signs of blood production, when I saw her for my Tuesday appointment. She said that it was in dorect contrast to the slides she had from my first biopsy, which were completely "dry", as to say that no blood was being produced hence the original diagnosis. That being said, I am still sick. My blood counts are rising, most notably my platelet count, but I am still neutropenic and have little to no immune system. I am still unable to work for the time being. I am still in thousands of dollars in medical debt and now it seems my car has stopped working to boot, which is my only means of getting back to work when I am well enough. Suffice to say I still need the funds, but the circumstances seem to have changed based on my current results. There's still a possibility of my counts nosediving again though as well which would lead me to transplant anyway, but that doesn't appear to be the case as of right now. I am unable to work *now*, but hopefully I should be able to much sooner than expected and I would rather pay for myself as much as possible. I didnt expect to improve when i did and neither did the doctors. It is friday, and i quite literally was supposed to start my pretreatment chemo on Monday. My doctor said she's glad that I made the improvements when I did so that they didnt have to give me an intensive and painful transplant that I most likely don't actually need now. In any case, regardless of how things go from here, thank you to everyone who donated. It means the world to me.

Edit 2: (copied from my fb status 11/7/23)

I glanced at my inbox for the first time in a long time after talking to my therapist some about my medical "journey" (I'm not sure what else to refer to it as), and I've been reminded that there are several people that are not in the loop still. I am also getting questions often from people who *are* "in the loop", so I decided to make a master-post that is both an update and an FAQ rather than re-explaining an essay's worth of information to several individual people. Feel free to share this one around and/or ask additional questions while I've got the can of worms open.

I had put an update on my gofundme when things first started changing, but I don't know who all had seen it. So as a refresher, I was supposed to start Chemo on a Monday, and the Friday prior, I got yet another bone marrow biopsy and also a regular blood draw, where we saw that my platelets had gone up. They didn't go up so much that I was within the range I needed to be, but it was a significant enough jump that they were surprised considering that generally that does not happen with Aplastic Anemia. After my biopsy, they actually let me look at the slides they collected and I can attest that my bone marrow was very liquidy (which it's supposed to be, but was not prior). They commented that it was surprising. My specialist said that she looked at the slides and they appeared to be "slightly celluar which is not typically consistent with Aplastic Anemia", and so she said she wanted to postpone my transplant which, again, the chemo pretreatment was supposed to start literally the following work day. She wanted to keep an eye on me and see if I'm actually getting better, or if my body is pulling some weird last-hurrah type thing.

In the following weeks, my counts, slowly but surely, continued to rise. I was technically able to return to work a bit sooner than expected. My last blood draw appointment at Hopkins was about a month ago now. What they now think it was was a very intensive case of bone marrow suppression caused by all the antibiotics rather than acquired aplastic anemia caused by the antibiotics. They told me that, for all intents and purposes, they think that I'm "okay" now. They also said that they (meaning the specialists) "don't ever go away", which is to say that if I experience a flare-up, they're one call away as they will be keeping my records.

So, for the FAQ:

-"So you're healthy now?" In regards to blood production, yes. My immune system however has taken a hit and so I have been repeatedly sick lately. I am sick every few weeks, sometimes it pretty rough and it puts me out of commissionfor a few days, even if it's just a cold. I also am sensitive to every antibiotic I've tried since this began, and moreover NSAIDS (which is like the family of ibuprofen) cause internal bleeding for me now, so no painkillers (which also makes all the repeat sickness difficult due to most OTC cold remedies having NSAIDs in them). But yes, in general I am allowed to do all the things that were restricted before again.

-"How are you doing mentally?" Not good:)

I just started going to therapy because I am really struggling to put my life back together right now. Truthfully, I have been trying to ignore this all, because it is the most horrificly traumatizing thing I've ever been through, and it has given me mental whiplash in more ways than one. However, I've just been getting worse and worse into depression, so within the last month I started with the therapy sessions. It's ironic how it's also taking a financial toll on me, considering that my financial situation is also not good right now and a major source of mental distress for me, which also brings me to the next question:

-"How are you doing financially?" In debt:)

I stopped promoting my gofundme when things started to change because even though I still had all the medical bills, my situation became less dire, and for some reason I felt guilty. I never lied about what I was going through, and I know it's silly to feel that way, but the changing diagnosis made me feel so strange and suffice to say again, I wasn't mentally well. I knew I didn't have enough money, but I just kind of let it go by the wayside, especially since so many people *did donate*, and I'm very, very grateful because I'd only be worse off without the help of everyone. Now, I am in debt. Everything left is on my one credit card currently. Before all this, I had several thousand in savings and a credit score in the "excellent" range. Now, even if I put every penny I had towards my card, I wouldn't be able to pay it off. I haven't even checked the score. I don't really wanna know right now. I'm even more stressed because 1. The holidays are around the corner and 2. A doctor sent a sample of mine to an out-of-network lab a few months ago and l, despite the lab NEVER SENDING THE RESULTS, I am being charged $1600 for it. One urine sample. I'm trying to work it out with consumer protection right now, but I don't know if that will pan out. Anyway I'm done being proud or weirdly guilty about things beyond my control, so I'll repost the gofundme link. But no, I won't be offended if you do not donate, the economy is in shambles and I'm not dying anymore, so it's not a necessity. Really only send something if you have the money to spare:

[Edit] link moved to comments because Facebook was making ONLY the link shareable, not the text

-"So you're back in your apartment?" Yes, have been for a few months. My cat Chuckie snuggles with me nightly as he is no longer a threat to my health. I did miss him a lot.

-"Was all of that painful?" and the subsequent "So what *was* painful, then?" Frist of all, it's kind of unhinged the amount of times that I've been asked this. But I'll do it here anyway because it's inevitable that I'll be asked again. This is going to be a long one, and I'll also point out now that you can obviously skip over any of these questions if you weren't wondering about them anyway. (Sometimes someone gets reading and they dont stop even when something is uncomfortable, I know I do, so no, you definitely do not have to read about my pain). Not having very much blood was not "painful", no. Part of what was so hard for me during that time was feeling ultimately fine while just being in bed and getting up to use the bathroom (when I was allowed), but not much pain directly from that. There were random instances of pain though. When I was home for one night after getting home from Sinai, I definitely overdid it and ended up in a position where I couldn't move either leg. Having them moved for me hurt. My boyfriend and mother had to lift me by either arm to get me to the bathroom. I couldn't move my legs in a very similar way to that after getting home from a concert the night right before I went to the hospital the first time (obviously I was unaware of my condition then), but I do not know in a technical sense what caused that to happen. Aside from that, the mental anguish from all of it/specific instances, were the only things that would be "pain" directly from my condition. I was disallowed from crying, literally, because of the way it affects your body and blood, and because you have to blow your nose when you sob, and blowing your nose meant that you could get a nosebleed easily, and nosebleeds could have killed me when my platelets were as low as they were. It was literally doctors orders to not even cry for that reason. My ability to cope was kind of limited. Every other instance of pain was secondarily inflicted. I made a top 10 list in my head that I do in the voice of Chills (Burger King Foot Lettuce guy) because I often try to cope by using humor. I can give the top 3 in a non-comedic way here, though:

3rd place is the first bone marrow biopsy at Sinai, the actual procedure was honestly the best experience I had at the hospital the whole time, but after the numbing started to wear off I laid on my stomach and was in so much pain that I couldn't move. They had to give me multiple painkillers, eventually including 2 doses of oxycodone (which if you know me, you would know I'm terrified of opiates so that really was a last-resort)

2nd place is getting the picc line removed. All the nurses winced when they noticed I had "the orange one" after I told them I was getting it out. Since it's a relatively quick and relatively non-invasive procedure, they don't numb you. They had me in a room with a bunch of other patients in the cancer ward for the removal, they just closed the curtain when I started to scream. The "orange one" has 2 prongs that, apparently, are much like fishhooks, except that they aren't rounded, they're angular. They did have the barbs at the end though, evidently this is to make sure it stays in place because obviously they are meant to be there for a long time.

3rd place is actually getting one of the IVs put in at Sinai. My veins shrank down after a short bit, and so it became very difficult for them to find a place to put in a new IV when it was time to get one changed. As a result, there were 2 times where they needed someone to come in with the "doppler" and use that machine to find some usable ones (the best way I can describe it if you haven't seen it is as a live-action x-ray but for veins and not bones). The first woman who did this was fine and it hurt as bad as any other IV really. It was not a big deal. The 2nd guy, though, did not listen to me when I told him an area to look. He did what he figured would be easier for him, and ignored me when I was screaming, I guess figuring it would be bad in any area (considering I got multiple IVs after the fact too before the picc line, definitely not true). He shoved it in carelessly (also the tube that sits inside your vein is much, much longer when they use the doppler) and it rubbed against a nerve. It was also in the "funny bone" area, so it sent the worst shooting pain I've ever experienced down my arm. I literally screamed on and off for at least an hour, and was crying for hours beyond that. My parents, sister, and boyfriend Jeremy were all in the room for that one. They all looked traumatized just watching. I honestly hope the guy who did that to me with such complete apathy has someone treat him similarly in the future. That one didn't need to happen like that.

-The last thing I will say is more of a request than a question. Please do not tell me that I'm "strong" or "brave", and especially do not tell me that you "don't think you could have done it" yourself. I have my reasons for why these comments bother me deeply, but I don't think those reasons belong on a this status. Just please, do not say any of those things to me. I really mean it.

Thank you all for being supportive, or even just for reading all of this, because I know it's a lot. It means a lot to me. Like I said, the can of worms is open, so feel free to ask anything additional in the comments, even about the painful details if you still have leftover morbid curiosity. I don't see myself wanting to talk at length about this beyond my next session on Monday. In any case, thank you

Edit copy/paste from fb 5/16/24

Hello all. I have debated doing this again (as in sharing my gofundme again) because my medical issues are not ongoing. For all intents and purposes, I'm better. I mainly only have issues with nsaids causing internal bleeding, and being more prone to sickness and severity like I stated previously. Unfortunately though, the gofundme money didn't cover all of the bills in conjunction with my messy work schedule. I had mentioned before that I was in about $2k worth of debt, all of which at that point was on my credit card. It has not gotten better, for 2 main reasons: my job at the bindery is (somewhat) spotty with hours. Those who know me irl know that I'd toggle back and forth between working like 60 hr work weeks sometimes to having literally no work at all. The juxtaposition of the overtime worked well in tandem with the periods where there was no work, because I would throw most of the extra funds made during OT into my savings and then rely on that later. But, the medical stuff cleared out my savings completely, and there hasn't been a single overtime period since then. Our busy season usually would start in mid-march and continue through the early fall, but the big orders we usually get haven't come in now and I've only worked one full week at the bindery in the past month, so I have no good reason to expect them too. I did pick up another job at the end of last year as a substitute teacher, which should be ideal because my degree is in education, and I decide when to pick up shifts so it doesn't typically conflict with my main job (I'm actually at a sub assignment right now). The problem is that it pays $5 less an hour than what I make at the bindery, and it's not possible to even get an actual full 40 hours with the way that it's set up (the days are never a full 8 hours and also there aren't assignments that I'm able to accept everyday). Working full weeks as a sub only brings in just enough to pay rent, gas, and groceries (though with the way prices are right now, idk about that much longer). Attempts at getting a 3rd job that actually pays have been futile so far.

The other reason, though, (and the reason that I considered resharing the gfm) is that I keep getting new bills from the hospital(s) for everything that happened last year for some reason. In the last month, I got one for Carroll for about $350, and now I've gotten 2 more from Hopkins that are for a little over $200 each for appointments that happened in may and june, because my old insurance company has retroactively decided that they shouldn't have had to pay what they did for some reason??? It's not actually explained in a way that makes sense, they're just hitting me with the new "adjusted balances" out of nowhere and I have no idea what to do about it. I didn't get out of the $2k credit debt from the last round of bills, like I'm barely staying afloat as is, and now I'm being hit with more bills that were already done with that don't make sense.

I stopped promoting the gfm last time because as I've said before, after my changing diagnosis it felt wrong to do so for some reason. It felt wrong even when my dignosis was grim and actively dire because I've developed a bit of an aversion to "ebegging" (which truthfully I'm not sure why I feel that way when I have definitely shared other crowdfunding things in the past for people I know or causes I care about, but). It took some encouragement from people who were around me to post it in the first place. I've been somewhat downplaying it to most of my peers, like I've just been making jokes about having no money and trying to carry on as usual but I'm getting to a point where I can't do that anymore really either. I also have joked about reposting the gfm, but after receiving another bill, I've kinda shifted beyond the point of joking about doing that. I talked to my mother earlier in a panic about this stuff, and she said that I should, after reiterating that she thought I shouldn't have stopped promoting it after my diagnosis changed or that I shouldn't have started discouraging people from donating after that point like I did. Obviously she was right but I couldn't have really known that then, as I obviously hadn't been hit with all of the financial toll yet (and maybe I still haven't apparently ).