IAMA previously healthy 21 year old who was diagnosed with an “unidentifiable” illness that left me in the hospital for a month, unconscious and on a ventilator, AMA!
My short bio: This time last year, I went to the doctor feeling like I had the flu, I had a high fever and a lot of trouble breathing, but didn't think it was that serious. I was admitted to the hospital, and the next thing I remember is Christmas Eve. The doctors were unable to figure out what caused me to become so sick, but I was heavily sedated and on a vent for almost 3 weeks, and when I woke up I had lost all my motor functions, I was unable to walk, barely able to speak, and my coordination was so poor I couldn’t even unlock my phone. I experienced "ICU delirium," which caused me to have a lot of really weird and scary hallucinations. During this time I also racked up over a quarter of a million in medical bills! Ask me anything about my illness and recovery!
Here is an album of part of my journey, that should help explain a little more!
My proof: A picture of me this morning. I could upload medical records or something similar if necessary, but assumed the album of pictures would be enough.
EDIT (12/5 8:30AM): thank you everyone for your questions and responses to this point! Just one note,while I appreciate all of the suggested diagnoses I have received, I feel than many of them either do not match my symptoms, do not match my exposure or have already been ruled out. As stated in some of the comments, my doctors tested me for pretty much every conceivable disease while I was in the hospital (viral, bacterial, autoimmune, cancer, etc), and also asked my best friends/roommates about any weird potential exposure risks I may have had. At this point I am not actively seeking a diagnosis, and it is unlikely that anyone without my full medical records would be able to give an accurate one. I please request that you stop messaging me with your suggestions of GB, Lyme disease, destruction of my gut biome etc. Not that the messages were not appreciated, just that I've heard it before, but there's a reason that my doctors had not diagnosed me with these somewhat common diseases!
Hahaha not from the future, I'm already on 2016 thinking because at work we are planning for the future year, I'm used to typing 2016, and thought I was backdating by writing 2015! I'll have to fix this.
I'm so happy to hear that you're doing better now! Do you know if your doctors at that time did a work up for Guillian Barre syndrome?
I don't know if I was specifically tested for that, but I was tested for pretty much everything (autoimmune, cancers, viruses, etc), so I wouldn't surprise me, although my symptoms don't match up with that too closely.
They would have done a spinal tap and/or nerve conduction testing to check for it..It just sounded a lot like it, particularly the virus like symptoms followed by loss of motor functions, often resulting in the need for vent support, and now gradual recovery.
The most important thing is that you're now on the mend!
Hmmmm I don't think they did a spinal tap (at least my mom never mentioned it to me and I can't remember seeing it in my medical records) but I'll have to check!! I'll have to do some more reading about it, that would be really interesting...
Are you still undergoing tests or procedures to make sure whatever it is is completely gone? That's insane to know it was some illness they didn't know what it was, and that it was so quickly that degraded your health, like some sort of insane virus that was just in and out. Anything that has to do with the lungs has always scared me to death because that's one problem I've always had. I can't imagine how worried your family and friends probably were during something like that.
Glad to hear it ended happily, and are you going to train for a marathon again? :)
For about 6 months after getting out of the hospital I had a lot of follow up doctors appointments, and they were running tests just to see if anything abnormal ever popped up. For a month they were doing weekly blood/urine tests, but nothing that strange ever showed up. I still had my weekly appointments for a while after that, but those were just as much check up as they were fixing some other issues I had from the long hospital stay, as I mentioned in another comment, my on-going stomach pains and things like that. I also had a lot of follow up chest x-rays just to check how my lungs were healing. I also had PT for about 4 months after I was released, partially just to get me back up to strength and partially to monitor how my body/lungs responded to activity and how they were healing. This basically just meant that I did normal PT stuff (walking on treadmill, riding the bike, doing different balance/easy strength training stuff) and getting my oxygen levels, pluse, etc at regular intervals.
My doctor has told me that we'll probably never know what it was, like you said it was most likely just a virus that we have no real tests for that came and went.
I always say that this experience was way worse for my mom than it was for me... I really don't remember much of the scary parts, and she was there for them all. She took almost a month off of work and never left my side from the day I was admitted until the day I was discharged.
Hi. I'm a critical care nurse and often when my patients wake up after being sedated they state they remember conversations, feelings, dreams etc. These often match up somewhat with reality. Do you remember any conversations or anything such as the delirium? Also was there ever a point that you remember being intubated? If so what did it feel like? What was something that could have improved your care from a nursing perspective? Thank you so much :) so glad to see you are doing better and that rainbow blanket looks FABULOUS!!!!
I've talked about it a bit in other comments, but I do not remember anything from the time I was intubated, besides dreams/hallucinations I had. I don't even remember any of the conversations I had for a couple of days after they removed the tubes.
I don't remember what it felt like at all, but definetly one of the biggest surprises was how weak my vocal cords were after getting the tube out. I naturally have an extremely loud voice and it was really weird being unable to speak louder than a whisper. Also like I said in another comment my nursing staff when I was in the ICU were really great! Don't really have any complaints about that haha.
I hope she answers. My dad was heavily sedated/intubated for a few days and never came out of it. I wish I knew if he was aware of anything going on or if he was unaware...I hope it's the latter.
I'm sorry to hear about your father, but if he was sedated to a similar level as I was, I felt absolutely no pain. Although I can't remember anything about what was going on around me, my mom does say that I would smile, and seemed to recognize when people were visiting me, so maybe even though I don't remember it, a part of me knew.
First of all it's good to see you're doing better. My question(s) is: What have been the most difficult thing since you have gotten back home? And what is the best thing you've done since you've gotten back home?
Anyways I hope you continue to get better! :)
Thanks! I think initially the hardest thing was accepting how weak I had become, and that I couldn't do a lot of the things I had before I got sick. I remember being in the hospital still and asking my mom about going on my snowboarding trip I had planned the next week, I really thought I was still going to be able to go, despite the reality that I could barely walk. Similarly, returning to school the next semester was really hard, I really couldn't go out and party with my friends like I had, besides not being allowed to drink, I could barely stay up past 10pm, so there were a lot of lonely nights in.
The very best thing I did after getting home was going to see my favorite band with my brother in January. My mom/doctors really didn't think I should go, but my brother had bought me tickets for my birthday in June, so I had been waiting a long time for this concert and was determined. I was in a wheelchair, and we got to sit in an awesome balcony section right above the band. It was such an amazing experience, not just because I got to see my favorite band, but also it was like my first time getting out of the house, being independent again and it felt great!
Thank you for the reply Leslie. Admitting weakness is something we're never very good at. The concert sounds amazing, it's lovely to hear you and your brother had a good time. How is your progress now? With that I mean, have you gotten back to walking and can be more independent again?
Yes! I guess I should've added this to the original posting, I am actually like 95% back to normal now! The only real lasting effects have been some ongoing stomach problems, ever since then I've had a lot of unexplained digestive pains that have been hard to figure out, but they're getting better. And my lungs aren't as strong as they used to be, I still get out of breath really easily, and running is a lot harder.
Ah alright, that's nice to hear you're almost back to normal. I hope you get to run your maraton sometime in the future. All you need now is start chugging pepto-bismol and you're all good. (I'm just kidding) Do you have any idea about what damage have been done to your legs and why?
It wasn't the illness causing me to be so weak, it was just from laying in a bed not moving for so long. Your muscles can deteriorate surprisingly quickly!
I experienced a severe bacterial infection that required hospitalization and was diagnosed a few months later with something called "post-infectious IBS". Has that been floated to you? Basically, it is something that can pop up sometimes after the body has undergone a major immune attack. Your guts get overly-cautious and finicky, and cause problems. In my case, I was underweight and malnourished for about two years due to this condition, and got most of my nutrition from vitamin supplements. Anything greasy, anything fibrous, anything chunky, anything seedy/with skins/etc they all would tear my stomach up, and I would pass my food out completely undigested. Sometimes I'd have a good week or two, and then it would come right back. I had diarrhea the entire time. It very slowly resolved itself and I am now at a healthy weight and able to eat what I want most of the time without my stomach flaring, although when my immune system gets grumpy now (for example, during a cold or recently during the last 8 weeks of pregnancy), the constant diarrhea returns immediately.
That's really interesting, at this point in time my working diagnosis is IBS type C, which stands for constipation. I've pretty much got the opposite problem, that if I'm not taking medicines I get really really constipated and it's super painful. It has slowly gotten better, despite the fact that none of the treatments specifically have been doing much for me, so it sounds like it definitely could be the same thing as you are describing!
I'm trying to start recovering from cancer, and I'm also incredibly weak. Any advice? I can stand up from a chair with significant effort and the use of my arms and upper body. Standing upright for longer than about 15 minutes causes nausea, shortness of breath, and dizziness even on a good day. 21F.
Do you have a PT you are working with? I know when I first got out, I went to a PT and they just did not take my problem seriously, I think mostly because I was young and "uninjured," weak, but without like an actual injury.
I went to get a second opinion, and this PT actually asked me what my goals were, what I wanted to accomplish, etc, and made a treatment plan that helped me to reach this goal. She worked with me until I was at the point that a "normal" person should be at. Not just getting me to a point where I can function, but getting me back to the point that I wanted to be at.
Aside from that, my general advice would just be doing the little exercises they tell you to do, even if they're stupid. I know I hated doing little leg lift things, felt like they weren't doing anything, etc, but in the end they really did help me gain strength, especially at the beginning when I couldn't do any "real" exercises
Curious case. What did the final diagnosis come back as? For coding and billing purposes the hospital would have to put some label on what happened to you
A lot of my paperwork stuff says "pneumonia as a result of an unidentifiable illness," "complications resulting from an undiagnosed illness" and things like that if I remember correctly. I haven't looked at it for a while, but I'll look back at it when I get home from work tonight!
That's a truly harrowing experience to go through! It's good to see that your recovery has been successful and you look back to normal.
I'm curious, since you mentioned your medical bills, how is that working for you? Not asking about your specific financial situation but more of how someone is suppose to finance that level of unexpected expenses? And how does insurance treat you?
Yeah, when I first got the hospital bills it was really shocking... It was honestly really stressing me out that at 20 years old I could be in that much debt just for trying to stay alive...
I applied for financial aid from the hospital, and was originally denied, which sucked. A couple months later I called their payment office to talk about payment plans and that kind of stuff, and the woman was shocked that I was denied aid, and told me she would have someone re-evaluate my application. I was eventually incredibly lucky that the hospital was able to give me 100% medical coverage for the next year. So this covered all of my bill, and all of my follow up care/PT/appointments.
Despite this I've still had some outside expenses, most notably from a private GI specialist that I have been seeing. I've still had some insurance problems, mostly related to turning 21 and my eligibility status, but overall it hasn't been too awful, after those first couple months.
Thanks for sharing! I'm glad to hear the hospital was willing to give you some aid. One clarification, if you don't mind, what exactly do you mean by 100% coverage for the next year? Does that mean they offer you a one year grace period before payments have to start coming in? I've never been involved in an emergency medical situation, but it's reasurring to know they don't expect your bills to be covered the moment you walk out the door.
I mean that they paid for everything from this hospital stay, and for any additional care I needed for the next year. I'll never have to pay this stuff back.
This is a good point to emphasize. If you are denied coverage or reimbursement in the future, keep reapplying. My brother is in insurance and he tells me many times the company will deny coverage based on the slightest pretext. If you persevere and show that you aren't going away, many times they will then cover it.
You're so right! I think what happened is that when I first applied, I had just over $2000 in my bank account, which is the limit for being given aid. It's funny though because, the only reason I had this much is because I had been in the hospital for a month and not buying anything! It's also kind of funny to me that $2000 in my bank account if considered "enough" to be responsible for a $250,000 bill!
Was it Lupus?
I was tested for it, but no lol
Obviously you were out of it for a while, but based on what you can remember, how do you feel about the care you received during the whole ordeal? And how did you feel when you learned that the doctors couldn't identify your illness?
Also, have you learned much about staying healthy that you didn't know before?
I feel that the care I received while in the ICU was really top quality. Like you said, I obviously can't remember more than a couple days there, but all of my nurses in the ICU were so awesome, there's one in particular who I really loved, I wish I could remember her name so badly so I could send her a card or something.
When I was on the main floor of the hospital, both before and after the ICU stay, I felt that my care was adequate. Nothing spectacular, but also nothing too horrible, which is pretty much to be expected when those nurses have way more patients to care for.
My only complaint would be that when I was first admitted, I kept telling my nurse that I needed tylenol or advil like every 4 because every time they wore off, my temp went really high and I could not breathe, this is why I was admitted in the first place, because this happened while I was at the normal doctor's office. They kept not giving me the medicine every 4 hours, and each time I would crash and then 1000 doctors would have to come in and see what was happening, which was annoying, but I'm sure they weren't doing it on purpose or anything, I just don't think they felt it was as urgent as I did.
Does your mom know? Or could you just send a general thank you note to the ICU unit? You could include a special thank you with a physical description of the nurse you remember within the larger thank you. No nurse would feel bad not having their name remembered when their kindness was.
I don't know, she might, I should ask her. I was actually just making plans to bake a bunch of Christmas cookies to take there to the ICU soon, so maybe I'll do just that, that's a great idea!
This is crazy! Something similar happened to a family friend of mine. https://www.booster.com/team-cyndi << that is her story. She is still fighting to recover. Last update was that she was given steroids as a last chance and they seemed to be helping. They have NO idea what caused her to become so sick
So I guess my question is, what was your prognosis? Have you exceeded the doctors predictions at what you would regain? I'd like to share your story with her family. It might be encouraging.
I'm sorry to hear about your friend, I hope she gets better!
My prognosis at this point is pretty much a normal life I guess, my doctor is still more careful about watching me when I do get a cold or something, just to be careful but that's it at this point. I would say that I probably did surpass the doctor's predictions about my recovery, I got to go home much earlier than predicted, and they didn't want me going back to school the next semester and I did and ended up fine!
Nice UVA sweater! Wahoowa?
Glad you made it :)
Yep, currently a student, was treated at the UVA hospital! Go hoos!
Wanted to see if anyone else had asked first before I did - wahoowa! How did this illness end up affecting your schoolwork? It looks like you got sick right around the middle/end of finals and managed to go home before the next semester started, but I'm guessing school in the spring wasn't the easiest?
I answered about spring semester in another comment, but didn't talk about finals from that semester. You're right that I actually ended up "sleeping" through all of my finals that semester (lol). Most of my professors were awesome about it, one gave me the option of not taking it, another let me take it at home whenever I was ready with no time limit, another I had to take in person, but I'm pretty sure she ended up just giving me 100% on it haha. I did have one professor who made me take the online final while I was in the hospital, I ended up getting an A- and I was really pissed, but whatever haha.
If you don't mind me asking, what does something like this cost? Also, in another comment you talked about going to see your favorite band. Who is your favorite?
My initial bill was about $250,000. Luckily the hospital gave me 100% coverage and paid for all of it.
The band was Mae :)
Goddamn, Mae is touring again? Mae is still around?!
It was the 10 year reunion tour of the Everglow!! They only did a handful of shows, but from really close by to where we live so we were able to get tickets!
Why? Did you partipate in research of some sort?
Well this was a teaching hospital, so there were many doctors learning from my treatment. But the main reason is that I am a full time student with little to no savings or assets, and a minimum wage job that would never be able to pay of those debts.
Hey there, ICU buddy! I was in the ICU the same time as you, for a rare, potentially life threatening renal disorder (I'm okay now) Although I was out before Christmas, I was hooked up via PICC line to 24/7 dextrose hydration and feeling like I'd been run over by a train. When I saw that picture of you doing the stairs, I remembered doing the same thing, and I remember the hospital bill for it - $750. For walking up and down stairs. Thank god for insurance.
Question time - were you able to go back to school? Do you think you'll train for a marathon again?
My doctors actually recommend that I take a semester off. Like I talked about in some of the other comments, I didn't really register how seriously sick I was at first, and I made a comment about going back, and they were all like "Uhhh we are not sure if you're going back." But I could not imagine spending an entire semester away, and went back for the spring semester with a lot of help. I only took the minimum number of credits, and I had a lot of assistance from the Student Disability Access Center, which included extended testing time, flexible deadlines on assignments, and other students to take notes for me. I also had a handicapped parking pass for grounds which was honestly one of the best things that ever happened to me. Even with all of this, my grades this semester were awful, but I don't regret it for a second haha.
In terms of training for a marathon... Idk... I tried to get back on track with running after I finished PT, but my incredibly slow progress (compared to my progress before getting sick) was really discouraging. I switched to lifting weights this semester, which I am absolutely loving! I'll probably try again for the marathon but for now I'll stick to weight lifting!
Hi! We are all glad that you're doing better!
Have you asked the doctors to name this new illness after you?
Thanks!! I don't think that I had a "new" illness per-say, I think it was just one that they couldn't identify. I think their best bet was that it was a virus that they just don't have tests for, or something like that.
Glad to see you're almost completely better! That's truly terrifying. As a 23 year old, seemingly healthy woman, it terrifies me to think something like this could just randomly happen with no explanation.
My question is, do you attend college in the same place as where your parents live? It's good that you had family and friends who were able to be there for you. All of my family (primary and extended) live at least 6 states away from me, so I would initially be alone if something like this happened!
My parents live about 3 hours away. Like o said in a separate comment, my mom took like a month off work, she came the day I was admitted to the hospital and didn't leave until I went home.
That's great, I can't imagine how scary it must have been for her too. I don't have kids, but thinking you might lose one is probably the worst feeling in the world. So she kept her job and everything? Glad it worked out that way for her and you :) thanks for the response by the way!
Yeah, I think she had a decent amount of time off saved up, but I also think her co-workers filled in and helped her out a lot. She's a teacher and this aligned with her Christmas break as well, so she had some days off during this time too!
That album is so sweet! So many people seem to love you and care about you. I got a little teary myself.
Do you still have the giant plush shark?
That was honestly one of my biggest take aways from the whole situation, I really and truly have never felt more loved than I did at this time. I get teary thinking about it sometimes too. Honestly having Christmas in the hospital sounds like it would suck, but I've got some really fond memories from this time.
AND YES! The shark (his name is Sharkie) has been with me through thick and thin! I still sleep with him every night and take him everywhere with me:_
You have lots of pictures of you while you were sedated, including video. How did you feel about your ordeal being filmed when you were not really conscious to agree to it? I would have been pissed if I woke up and realized people had been taking pictures.
I actually really really liked it, and I'm so thankful that my mom was there and knew that I would enjoy it when I woke up. The pictures really helped because I really had no memory of what happened for so long, it was great to see what I looked like, who had visited me, what was happening. I actually do remember at one point wishing there had been a 24/7 video of it so I could've seen what happened, especially during procedures.
As a side note, it was my mom, dad, and brother taking most of the photos, and they didn't post them publicly anywhere until I had woken up and given permission. I agree it would've been kinda weird if they posted them to fb or something without my knowledge
Sounds like a terrifying experience, but I'm glad you are doing better!!
You mentioned you don't remember a lot. What's that like? Are they just fuzzy memories, or are there just a few clear memories but you are unsure when they occurred? and when did these memories come back to you? I can imagine it can be frustrating or confusing.
Also, what is something you wish you didn't remember and something that you wish you did remember?
I have no "real" memories at all from the time I was on the ventilator until a couple of days after. The only things I remember are dream/hallucinations that I had, but I can share a couple of those!
One that is funny now, but was really scary at the time is that I thought I had a baby like "off the grid" at my friend's parents' house, and that they had taken the baby from me. I've got no clue why I dreamed about his parents, as I've only met them once. It was really scary because there were no records of the baby and it was taken from me, and it seemed soo real. One of the first things I asked about when the tube was removed was where my baby was.
When the tube was removed and I was being weaned off all the sedatives, I did have some dreams that were somewhat connected to reality that I don't remember that well but were really scary, thinking there were bugs crawling over me in the bed, that my parents had been killed and the people in my room were impostors, things like that.
I really wish I could remember all of my friends and family who visited me when I was sick. I had family visiting from Ohio and Wyoming, and so many of my friends came and spent time with me that I can't remember, I wish I knew who had come to visit so I could thank them better for their help and support.
I wish I didn't remember the night that I was admitted to the ICU, right before they sedated and intubated me. I couldn't breathe, and everything the doctors were trying was not helping and it was so scary. The very last thing I remember is them trying some steam thing that was supposed to help me breathe easier and it just wasn't working, I just remembering being so out of breath that I couldn't even tell them that I couldn't breathe. It was probably the scariest moment of my life.
EDIT: I thought of something else I could remember! Despite not knowing sign language, when I was unable to talk because of the ventilator, I was using sign language to try and talk to my mom and roommates! Apparently I kept signing my brother's name, and then something that began with "br" and I wish SO BADLY that I knew what the heck I was talking about, or even how I must have subconsciously picked up sign language?
I know this isn't exactly in the spirit of your AMA, but your lipstick in that first picture is rocking my world. Do you know what color it is?
Also, really glad to hear you're doing so much better. I had a friend who went through a similar thing with GBS. I know how difficult the road to recovery was for him, and how long he struggled with the fear and anxiety that it could happen again. How are you coping with the psychological aspects of your recovery?
Hahaha actually it make me really happy you noticed, its one of the NYX Vamp lipsticks in temptress!
Psychologically I would say I'm doing okay, every time I start to get a cold I do get a little scared that it's going to turn into something more but that fear is abating as time goes on:)
In two of the photos, your hands have been covered by white cloth? What was this for?
Also, how did it feel to have so many tubes inside you? Did they prevent you from sleeping on your sides?
I really don't remember the feeling of any of these tubes inside of me, the entire time I was on so many sedatives that I can't remember what was happening, but I apparently really did not like the breathing tube, which is why I had on the white gloves you mentioned. I kept trying to pull the tube out, which is why they put the gloves on, and also put me in restraints attached to the bed. I'm not 100% sure if this is because it was uncomfortable, or if it was due to being confused and not understanding what was going on.
Either way, being in the gloves and restraints really pissed me off, heres a gif of my trying to pull them off haha. I was successful a few times, but was moving so slowly that they usually realized before I caused any real damage.
Oh my god that's terrifying :-x
I mean, it's nice and all that you can lauh about it now, but the idea of being strapped to a bed with tubes shoved down your throat against your will... ugh, nightmare fuel. Good to know you're doing well now. Hopefully whatever that was never comes back :(
I think the main reason I can laugh about it is because I don't remember any of the bad parts!! I make jokes about it all the time and my family and friends sometimes don't think it's as funny as I do haha
I just realized that your hair was cut during your illness. Is that because care was so complicated? Do you remember it happening? I'm really glad that you're doing better!
My hair was not cut during my time in the hospital, not sure why it may look like that
Wow, your story is amazing! I'm glad you're doing much better now. I also had a "mystery illness" when I was 20 or 21, but it fortunately didn't land me in the hospital. I was just stuck to the living room couch for several weeks. I was consistently fevered for about a month, and had some lingering, minor side and abdominal pains for a few weeks after that, and then continuing weakness/ fatigue for about 3 or 4 months. I was tested for everything from mono to leukemia to kidney infection. My doctor described it as a "weird virus."
I sometimes worry about a relapse. It's so hard not to know what, exactly, something like that is.
My (then) boyfriend was terrified of this mystery disease and wouldn't even come visit me, even though I was scared because he thought he might get it. Nobody else around me got sick, but that didn't matter. Was anyone afraid to come near you for fear of contracting it?
Idk if anyone was afraid to come near me necessarily, but everyone visiting me was required to wear masks for the first couple weeks I was in the hospital, since they didn't know if it was contagious.
what do you have against thickened water? i think its pretty tasty in a really weird way haha
Idk I could not stand the thickened water, I didn't mind the thickened juice that bad, but the water was just awful
Why should I care?
I don't expect everyone to care. But according to the sidebar, AMAs are supposed to be about "Something uncommon that plays a central role in your life" or "a truly interesting and unique event," and I thought this fell under both categories.
Wow I'm sorry to hear about your sickness that is scary. One day you can feel healthy and the next you're on a breathing tube. Ps it says the dates are 2015 on your album I'm guessing this was 2014 unless you are from the future. Are you from the future ?
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