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Effexxor posted:Jesus, those pics. I'd thought Figure1 had desensitized me, but nope. Glad you survived and are doing better. Also, your cats are freaking awesome and I would enjoy more pictures of them. My kitties ARE awesome! I missed them so much while I was in Toronto. For the first year there I kept seeing them out of the corner of my eye. Then during my second transplant I desperately wanted Xanadu with me in my hospital bed. For some reason he is the one I wanted most. Bombay looking guilty  Xanadu posing in front of a picture of us that a friend took  Dorothy is now living with my mom on the farm because she didn't get along with my wife's cat  My wife's kitty Ophelia  It used to be extremely isolating to have CF. I was very depressed and very lonely for a long long time. I grew sickly and was unable to keep up with my peers. I pretty much missed a large part of my early 20s from spending weeks on end in the hospital over and over. The internet has been the place I have thrived since I was a teenager. The escapism is a part of it, along with social interaction, pain reduction, and keeping my mind occupied while doing a lot of breathing treatments for the old CF lungs. Since transplant things are a lot better but I still need to isolate myself from other CFers because of their chronic infections and my lack of immune system! There are great online communities for CFers and their caregivers. I got to know a lot of other CFers during the transplant process but only by proxy; my mom or wife would ask all the questions I had for them and relay them back to me on the other side of the transplant gym! Bum the Sad posted:Odd question Turp. Was your ecmo a ghetto rigged Centrimag, i.e. a VAD pump with an bypass oxygenator(for open heart) spliced in? Those "motors" are identical so I'm sure it was it is just funny that you survived for three months on not even a proper ECMO circuit. Yes, it was a modified device! Apparently they are now standard of care for their mobility/because they are easy for the nurses to monitor. That's what some guys at the Canadian Cardiovascular Congress said.  mizbachevenim posted:Is it something you encourage other CFr folk to do? If they are going to need a transplant they should definitely get on the transplant list as soon as their lungs get in bad enough shape. But I am hoping that with new treatments there will be less of a need for transplant! I may never be able to benefit from them, but it is looking like we may have an effective treatment, at last, for the underlying issues of CF.
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Jan 19, 2015 02:34
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I followed the previous thread, and maybe the one before. Just a few days before you posted this it occurred to me to think "hey, I wonder if Turp is still with us" and I figure it's probably not good news since the thread's been gone for a long while and then I see you posting in GBS. 
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Jan 19, 2015 09:37
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No questions. Just read through it all and I'm impressed by the strength of your character. Sounds like you have an excellent support system as well. Good luck man.
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Jan 20, 2015 08:24
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Glad to see you're still around! (I am too.) It's weird to see the horizontal  -faced scar, since I just have a straight vertical 20 cm one.
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Jan 22, 2015 09:24
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Didn't read your old thread, but good luck Turp. Hope it all works out for you. What are the chances of potential future breakthroughs RE: transplants/'prosthetics'?
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Jan 24, 2015 01:33
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I imagine at times you found it difficult to conjure up the will to live. What, if anything, made the most difference?
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Jan 24, 2015 03:49
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No questions, I'm just glad that you're doing well bud! 
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Jan 24, 2015 04:47
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I popped into A/T for the first time in a few years and see this thread, it's pretty drat inspiring. Keep doing you, buddy  FWIW I'm an organ donor (and ride motorcycles...)
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Jan 24, 2015 23:16
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Sorry for my laziness updating the thread recently, I blame things being busy around here in a really good way. To start, here's a picture of my meds.  The pill case at the bottom is a week's worth of meds separated into AM and PM. The pills scattered below it are Saturday morning's dose. I take more meds at morning than night because that is when I take the bulk of my anti rejection meds. M, W, and F are days I take antibiotics, so those are my most pill intensive days. Vitamin K ampules I mix with a drink once a week. And yes, the Flintstones gummies are my multivitamins and they are awesome. I take 4 a day, 2 morning 2 night. The red and grey pills are digestive enzymes and I take about 30 a day/1000 a month. All the white enzyme bottles there add up to about 1000. The pharmacy bill shows the enzymes alone as costing nearly a dollar a pill, all of which is paid for by Canadian healthcare. The other meds are even more expensive. To the right of the spilled enzymes is my spirometer, which I blow in every day to track my lung function. The number it gives me on its little digital display is my FEV1, which is "the volume exhaled during the first second of a forced expiratory maneuver started from the level of total lung capacity." In other words, I inhale as deep as I can and then blast out all the air in my lungs as quickly as possible. By recording my FEV1 every day I am able to see trends and note if the number drops. The horror of my second transplant all started when that number did a nosedive overnight. For those who are curious, these days I blow between ~3.14 and 3.50 on any given day. It's a bit of a range but never seems to fall any lower, which is great, and on days when I feel super good the numbers reflect that. de la peche posted:Didn't read your old thread, but good luck Turp. Hope it all works out for you. What are the chances of potential future breakthroughs RE: transplants/'prosthetics'? Chances are huge! They are getting really good at growing artificial hearts and other organs out of patient stem cells now (gently caress YOU GEORGE BUSH) and it is only a matter of time until they create lab-grown lungs that are the perfect match for patients in dire need. I am also optimistic about the future of anti-rejection medication, better treatments for the Bronchiolitis Obliterans syndrome that wrecked me, and better machines that have their interior surfaces coated in an anti-clotting material that would allow them to circulate the blood outside the body without the risk of the patient bleeding out. Above Our Own posted:I imagine at times you found it difficult to conjure up the will to live. What, if anything, made the most difference? Yes, you imagine right. My wife Adena made the biggest difference. My love for her gave me a strength and bravery that I could never have found in myself otherwise. Without her I would have been lost. Pompous Rhombus posted:I popped into A/T for the first time in a few years and see this thread, it's pretty drat inspiring. Keep doing you, buddy Thank you for being an organ donor! Remember to make your wishes very clear to your family, because in the end the decision will be in their hands. That goes for all organ donors; you need to have the talk with your next of kin so they don't keep you alive in a vegetative state or let your organs get cremated.
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Jan 26, 2015 05:12
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WIll you be on antibiotics forever, and... isn't that bad for you? (Obviously better for you than not having lungs, but still.)
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Jan 26, 2015 05:27
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Do you sleep with a bipap?
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Jan 26, 2015 14:16
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photomikey posted:WIll you be on antibiotics forever, and... isn't that bad for you? (Obviously better for you than not having lungs, but still.) Yes, I will be on antibiotics forever. I have already been on antibiotics pretty much forever, it's kind of the norm for kids with CF. It's not unusual for us to be prescribed them as prophylactics to fend off infections being passed around at school, day care, and for simple things like going to the dentist (though that is usually a one-off, large antibiotic dose). And then there are all the times I was in hospital for 2-weeks of IV antibiotics to deal with infection. Near the end of my original lungs' life, my bugs had grown various resistances and I had been on just about every antibiotic on the market to find stuff that works. I was, however, very fortunate to not get MRSA or VRE, which are hospital acquired infections that would have had no problem disintegrating my dying lungs. Funny aside, I scared the docs at Toronto General and St Michael's hospitals in Toronto by culturing what they at first thought was MRSA, but was actually my very own home-grown version of Staph Aureas that WAS Methycillin Resistant, but then they had no problem wiping it out anyway; guess it wasn't as powerful as the real deal. I still had to be quarantined and everything while they figure it out, though! For current antibiotics I am on Sulfatrim and Azithromycin, both of which are typical for lung transplant patients. The Sulfa is for preventing a type of bacterial pneumonia that can invade lungs when you have no immune system. Azithromycin is commonly prescribed long term for both CF and Transplant patients because it has anti-inflammatory properties that help the lungs. There may be other reasons but I am not familiar with them. I have been on both of these antibiotics off and on for at least 15 years. There are definitely dangers associated with long term antibiotic use, not least of which is destruction of the good gut bacteria, which may have had a role in causing my massive nausea attacks. CF patients also often have damaged livers and kidneys as a result of antibiotic use combined with the progression of the disease. When I was in the ICU a lot of the painkillers actually stopped working for me because my liver had been subjected to so much medication over the years that it has turned into some kind of Terminator! My palliative care doctor said something along the lines of my CF liver laughing at everything they threw its way. AirCav58 posted:Do you sleep with a bipap? Nope, just my wife and a cat! I was only on bipap for a few days while I was dying, before they switched to the hardcore cyborgware to keep me alive, and I have no memory whatsoever of those days. Probably a blessing because I was apparently acutely uncomfortable and terrified.
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Jan 27, 2015 00:30
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How do you feel about your waifu's sugar-fridge related PRANK OPS? How long did it take for stockholm syndrome to kick in so that you could start loving Ophelia the hellion cat? Do the sheer number of different Jewish holidays and traditions confuse and terrify you, and how many do you think were invented by Adena solely for additional pranking opportunities? Do you believe love can bloom on the battlefield? Why do you recommend gross and terrifying dead baby related video games to people you call friends? That's all for now. With love!
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Jan 27, 2015 15:17
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Wow Bagger posted:How do you feel about your waifu's sugar-fridge related PRANK OPS? How long did it take for stockholm syndrome to kick in so that you could start loving Ophelia the hellion cat? Do the sheer number of different Jewish holidays and traditions confuse and terrify you, and how many do you think were invented by Adena solely for additional pranking opportunities? Do you believe love can bloom on the battlefield? Why do you recommend gross and terrifying dead baby related video games to people you call friends? That's all for now. With love! Also where is Ophelia's other arm in that picture how do cats work
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Jan 27, 2015 15:18
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I just noticed this thread. I wondered what had happened to you after the last thread went away. I'm glad to see you're thriving. In the last year, I went from having zero health issues to a bunch of health issues, some potentially deadly. My issues are in the realm of "severely inconvenient to mildly incapacitating," and I find them infuriating and disheartening. I imagine it's been a thousand times worse for you. Good for you managing to hold on to your desire to keep breathing, as well as keeping what appears to be a positive outlook. I see you credit a lot of that to your wife, and I totally understand that. I hope these lungs don't pull any goofy poo poo on you like the last pair. Ophelia is a great name, and an awesome song. Levon Helm's lungs sure worked.
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Jan 27, 2015 22:03
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It's so wonderful to see that you are still alive and kicking, Turp. I followed your last thread with great intensity and am very happy that you've made a third which focuses on your recovery. Looking at your regimen of pills - how does having that much medication hamper traveling or a social life? I just wonder about trying to cross the border with a small pharmacy in your carry on. Thanks for letting us in your family's life
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Jan 28, 2015 03:31
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I went scanning through A/T and saw the word "lung" and literally went "TURP'S ALIVE? YAY!". So hey dude, you're "that lung guy in A/T" in my brain I guess What's the hospital food you hate the most at this point?
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Jan 28, 2015 04:20
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I lurked the previous threads so I figured I might as well come forward and say I really enjoy reading your stories and am glad you're alive. I also became an organ donor because of you and talked to my family about my wishes.
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Jan 29, 2015 20:58
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Do your new lungs feel physically "different"? Like you can tell they're not the ones you had? This might be a bit personal but do you think about the donor a lot? That he's partly within you or something like that?
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Jan 31, 2015 11:59
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i don't post much but i've been following your posts since the last thread and i'm glad to see you in better health and spirits. i've shared this thread with my sister who is going through a liver transplant and your story was inspiring to her, as i'm sure it is for many others. keep on keeping on, man.
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Jan 31, 2015 23:57
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Did you thank Donald Trump? Do you have any dietary restrictions? Can you ever drink alcohol? What would happen if you were to smoke a cigarette right now? Do you think smokers are complete idiots?
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Feb 1, 2015 20:12
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Anya posted:It's so wonderful to see that you are still alive and kicking, Turp. I followed your last thread with great intensity and am very happy that you've made a third which focuses on your recovery. Yeah hauling around a backpack filling amount of medication is inconvenient. I bring it as a carry-on when flying back and forth from Toronto. I have yet to cross any borders with it and don't plan on visiting the states any time soon, so we will deal with that silliness when it comes! Fluffy Bunnies posted:I went scanning through A/T and saw the word "lung" and literally went "TURP'S ALIVE? YAY!". Oh man, by the time I was ready to leave that place there was barely anything I could stand to eat. The worst of the worst is the pureed stuff that looked and smelt so much like my barf I couldn't go near it. I'd slam the lid down over the plate and carry the tray to outside my door and close it. I used to rely on outside food for my nutrition because the hospital food was 80% garbage. Octarine Dream posted:I lurked the previous threads so I figured I might as well come forward and say I really enjoy reading your stories and am glad you're alive. I also became an organ donor because of you and talked to my family about my wishes. Thank you! Kuiperdolin posted:Do your new lungs feel physically "different"? Like you can tell they're not the ones you had? The new lungs definitely feel different. Not a big change from when I had my first set of transplanted lungs, but my CF lungs were absolute nightmares. They drained my energy and made me feel sick constantly. I forgot what it was like to live life without a chronic cough. I do think about my donors all the time. I wonder a lot about them and their families. I hope that everyone took some solace in the fact that their dead relative was able to save at least one life and hopefully more with their organs. I consider donors and their families to be heroes. Soon my wife and I are going to write two more letters to my two donor families and update them on how well I'm doing, and maybe we will get a reply this time. corded ware culture posted:i don't post much but i've been following your posts since the last thread and i'm glad to see you in better health and spirits. i've shared this thread with my sister who is going through a liver transplant and your story was inspiring to her, as i'm sure it is for many others. keep on keeping on, man. Thanks! I hope your sister's transplant is a huge success. Have you checked to see if you could give her a bit of your own liver? Beep Street posted:Did you thank Donald Trump? I didn't personally thank Donald Trump, but we have thrown around the idea of sending him a card. He's not my kinda guy but I remain grateful to him for helping us out. The main dietary restriction I have is avoidance of grapefruit. For some reason there are chemicals in grapefruit that cause immunosuppressant medication to stop working, which would lead to the body rejecting the organ. Other than that I am able to eat pretty much everything, and I am less picky now that I have less food aversions from all the nausea poo poo I was dealing with. For a few years my menu was down to almost nothing because I kept throwing stuff up. It is not recommended but I do drink a little now and again. I love a dark beer or glass of wine with dinner or just before bed. If I drink more than one or two drinks though I feel like poo poo in the morning, no doubt partially because of the antibiotics I am on. Alcohol is also expensive so I only get it every few weeks. My lungs are probably better right now than a lot of nicotine addicts, so I expect I could smoke a cigarette just fine, though i would hate it and it would make my lungs spasm because it always does. As for my opinion of smokers, I could rant for days. They disgust me, anger me, depress me, randomly piss me off. Toronto was rife with smokers walking down every street and blowing smoke in my face as I shambled along dragging my oxygen tank. When the snow melted in Toronto, a million disgusting styrofoam cigarette butts would thaw on every street because 99% of nicotine addicts are also litterers. Weird how everyone else has no problem putting their gumwrappers and coffee cups in the omnipresent trashbins, but smokers feel obliged to be shitheels. They also form knotted walls of cigarette smoke in the entrances to buildings and then get offended if someone on oxygen asks them to obey the signage that says smokers have to stay X metres away. I hate every person who drives and smokes with a kid in the car or smokes in their home with a kid. I hate people who drag their third hand smoke stench everywhere with them in public, spreading it into my pristine lungs that I worked loving hard for. I stared death in the face and now I have to deal with these self obsessed assholes asking if they can bum a cigarette and a light when I am walking down the street. My final word will be that smokers are loving idiots destroying themselves for no reason, and I would happily take the years of their lives they are throwing away.
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Feb 3, 2015 04:50
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Turpitude posted:The main dietary restriction I have is avoidance of grapefruit. For some reason there are chemicals in grapefruit that cause immunosuppressant medication to stop working, which would lead to the body rejecting the organ. http://en.wikipedia.org/wiki/Grapefruit%E2%80%93drug_interactions
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Feb 3, 2015 08:30
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Turpitude posted:I didn't personally thank Donald Trump, but we have thrown around the idea of sending him a card. He's not my kinda guy but I remain grateful to him for helping us out. Turpitude posted:smoking is wrong New question - you mentioned relating to Songs in A&E by Spiritualized (my favourite band, you have good taste) - are there any other songs/albums/bands that helped you through? Did you listen to much music when you were in hospital or were you too hosed up to concentrate on anything?
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Feb 3, 2015 22:15
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Beep Street posted:I'm not american so was only aware of him as some rich rear end in a top hat that gets mentioned in American Psycho a lot. I'm sure a letter on how well you're doing now would be nice for him to get though. Weed is nowhere near as bad as tobacco for a billion reasons I shouldn't need to get into. But you should buy your cousin a nice portable vape so that he can enjoy that fabulous plant with minimal lung harm. And get him a nice pot cookbook too while you are at it. Marijuana and its derivatives are the only things that ever made me enjoy food as a teenager/young adult with CF. I still take a medication, daily, that is synthetic THC to boost my appetite. I have met a lot of people with bad lungs and it was always caused by one or more of these things: -smoking cigarettes for decades -losing the genetic lottery like me, or developing pulmonary hypertension or having a hosed up heart that kills the lungs -getting cancer and having chemotherapy destroy your lungs, causing you to need a transplant -working with, and inhaling asbestos particles (I met a lot of sweet old guys who needed transplants for this. most didn't make it) No one ever needs a lung transplant for marijuana related reasons. Pot smokers also do it in private, don't drop litter all over the loving street or out their car windows, and don't throw an entitled hissy fit if a pregnant woman, asthmatic, or transplant recipient asks them to back off. Beep Street posted:New question - you mentioned relating to Songs in A&E by Spiritualized (my favourite band, you have good taste) - are there any other songs/albums/bands that helped you through? Did you listen to much music when you were in hospital or were you too hosed up to concentrate on anything? Music is one of the forces that keeps me living. I am always searching for new music to bask in. My life is constantly soundtracked and when I have been in hospital I have always had my music with me. While I was doing the workup for my first transplant, Arcade Fire's "Funeral" had just started getting hype online. I saw some goon mention it and ended up listening to it in the hospital while riding on an exercise bike in my room and fell in love with every moment. Their words were and have remained an inspiration and I can pretty much thank that band for saving my life. After the first transplant I was giddy and wild with emotions and insisted on cranking Meat Loaf's first "Bat Out of Hell" so I could belt "Paradise By The Dashboard Lights" out at Adena. The doctors standing in the hallway were extremely amused when they came in near the end of the song and told me it sounded like I was ready to get out of there! We also both found a lot of parallels in the song "Adventures in Solitude" by The New Pornographers, another Canadian band I love. The song is about how no one else knows what someone has gone through to survive after a hard experience away from their friends. It even mentions survivors guilt, which I have had to deal with after both transplants. During this last transplant I listened to a lot of Arcade Fire again, this time it was "The Suburbs" and I loved it dearly, but now I have a lot of hosed up memories and bad feelings attached to it, making listening to it an unpredictable experience. Pretty weird that such an amazing album triggers my PTSD, but it featured strongly in many hallucinations. My wife also played some of her favorite albums to soothe both myself and her during the endless succession of long, long days in the ICU. I can't listen to this one song at all without feeling like I am having a panic attack. Other artists who contributed to my survival... mashup artists like The Kleptones and Girl Talk and LUDACHRIST and The White Panda got me through some rough times with their wit and pop culture shenanigans. Morcheeba, Belle and Sebastian, Nick Cave, St Vincent, PJ Harvey, David Byrne... the list could go on for a while. I also listened to Tricky's "Evolution Revolution Love" over and over because I couldn't get it out of my head post tx, and Fembot by Robyn because I liked to sing it with Adena.
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Feb 4, 2015 02:07
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I had CF Clinic yesterday and there were zero issues with me. The best part of the easy clinic day was that I was prescribed some new mega vitamins that I only have to take 2 of a day, which will replace about 8 of my other vitamins. For example it has 6000 IU of Vitamin D, a ridiculous amount. I also handed in my first "memoir essay" in memoir writing class which focuses on PTSD and the trauma of going through what my wife and I did. Where can I upload it for people to read?
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Feb 7, 2015 00:19
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medium.com is probably the least effort way.
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Feb 7, 2015 00:51
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KARMA! posted:medium.com is probably the least effort way. Thanks! https://medium.com/@jreimer23/first-memoir-assignment-274d738f1ea2 So this isn't complete and my ultimate goal is to turn my story into a manuscript and get it published. My memoir writing class is nothing too serious, this first assignment will be commented on by my 14 classmates and professor (all of whom are much older than me, I'm the baby of the class) and I will receive their feedback then. If any of you want to give any feedback or ask me any questions about what I wrote here, that would be pretty awesome!
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Feb 7, 2015 21:07
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Wow, I found that really moving. My only correction would be to point out the cat went on a plane ride, not a plain ride. Also, talk more about the way you feel about the moral difficulties of euthanasia, given that you have actual experience from a side most people don't ever see.
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Feb 8, 2015 02:05
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Hey, I'm so glad that you're doing well! For some reason my memory jogged yesterday about you, couldn't remember your username or when your thread was, but google-fu fixed that. Love your cats, too
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Feb 12, 2015 12:53
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Turpitude posted:
the fascinating thing about asbestos is that it's not carcinogenic in the way that the term is usually meant. It's hugely unreactive, from a chemical standpoint (which is why it's fireproof, see?). What actually happens (and it's not confirmed that this phenomenon leads to cancer, but it has been observed, and it makes sense) is that the asbestos is so friable, you can get asbestos crystals that are tiny enough to not just be inhaled, but to physically disrupt chromosomes. quote:No one ever needs a lung transplant for marijuana related reasons. Pot smokers also do it in private Well, to be fair, if pot was totally legal, people might be more likely to smoke in public. So, aside from the vas deferens thing, and the low sperm motility (and of course the whole issue with your lungs), are there any other symptoms to CF that people might not know about? Can you be a blood donor?
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Feb 16, 2015 23:34
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After all the blood they've probably had to put in him, it seems counterproductive to try to take it back out 
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Feb 16, 2015 23:59
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If you don't want to, please don't, but could you tell us about yourr hallucinations? Have you ever had what you might consider a near death experience? I totally understand if you don't want to speak on it. So alternatively, could we hear the OD'ing on Dilaudid story? Thanks, glad to hear you are doing well
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Feb 17, 2015 19:55
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Parahexavoctal posted:So, aside from the vas deferens thing, and the low sperm motility (and of course the whole issue with your lungs), are there any other symptoms to CF that people might not know about? Asbestos dust is crazy, scary stuff. Women with CF can also have reproductive issues related to mucous buildup clogging their moving parts, but I don't know much about it. I know of several ladirs with CF who conceived with no difficulties. Diabetes is one a lot of people don't know about, I used to hear that it was 50/50 whether I would make it through adolescence without developing diabetes. It's a type of diabetes called CFRD, Cystic Fibrosis Related Diabetes, which is caused by our pancreases being gunked up. I didn't develop it until my time in the ICU and after the second transplant. I don't have it anymore because my organs recovered and my Prednisone dose dropped! But CFRD is interesting because unlike other diabetes patients, we are told to continue eating our high calorie high carb fat salt sugar diet that we stick to to gain weight, and just counter it with as much insulin as we need on a sliding scale. Dr.Caligari posted:If you don't want to, please don't, but could you tell us about yourr hallucinations? Have you ever had what you might consider a near death experience? I totally understand if you don't want to speak on it. So alternatively, could we hear the OD'ing on Dilaudid story? Thanks, glad to hear you are doing well I'm happy to talk about my hallucinations because it feels a bit like therapy. They were definitely tied in with being in a near-death state. When I had the worst of these hallucinations I was very, very close to never waking up. I'll start with the Dilaudid thing: Early in my time in the ICU I was on Dilaudid to relieve my symptoms of breathlessness. My dose kept climbing and climbing until my palliative care doctor told me I was on enough to wipe out everyone in the ICU. At around this point they started noticing my liver was going toxic, so they switched me, cold turkey I think, to Versed, which caused my first horrifying hallucination. I was laying in the hospital bed looking at my wife, who was sitting at the foot of the bed saying something to me. A nurse we really liked was nearby in the room, moving toward me I think. And then time froze and began repeating one second or so of time over and over in an infinite loop. I was trapped in this single moment of my wife in mid sentence and the nurse moving towards me. I couldn't escape it and couldn't will myself to do or say anything, I was completely paralyzed. I willed myself to talk and scream for help but nothing happened. I tried to move my arms and strike myself on the head but couldn't move them. Then suddenly I snapped back to real time and was being held down and restrained by the nurse and my wife. The nurse was repeating over and over to me, "I know what's wrong! We can fix it!" to pull me out of my terror. What they had seen: I had suddenly starter thrashing and slamming my fists into my head and saying that time was repeating itself and please hem me I can't get out. I was in great danger of ripping my lines out or thrashing out of the bed so they had to jump on me. I don't remember exactly when this happened in the time line, but I think it was before I was put on ECMO, which is pretty lucky. If I had flipped out and wrenched my arms around on ECMO I could have bled out. The other hallucination I feel like writing about right now is the one where I was convinced an ICU nurse was an evil entity and was out to get me. I was awake and hallucinating all night (possibly due to Haldol and a bunch of other hardcore meds in my body). It was after my transplant when I was very, very near death. In this hallucination I was laying in a gurney that had some sort of automated motor that was causing it to rotate in slow circles through this evil stinking old folks' home where the Bad Nurse had smuggled me for the night. In my mind I was in some kind of large gymnasium type room with those fold out wooden bleachers on the side. My automatically rolling bed was rolling me through this wide room in unpredictable circles and I was tugging on my chest tubes to try to manipulate the turns; I was convinced that these tubes were stuck in the wheel of the gurney. My nurses were checking on me all night and I was begging them to take me back to my room. I had no voice (tracheotomy) so I was struggling to explain what was going on. They handed me my whiteboard and marker and I tried to write in it but had horrible double vision. I said I wanted to go back to room "419" or something like that, which had no relation to reality. They tried to tell me I was already in my room and everything was okay. But in my hallucination I could see a room I could be comfortable in at one end of the gymnasium by the pop machines. I felt like if they would just put me in there I could finally get some sleep. Meanwhile I am laughing on the inside because this is so loving absurd, and I remember clearly thinking I was trapped in a Seinfeld episode and that my nurse was punishing my for something my wife's ancestors had done to her ancestors and I was the poor sap she was able to sadistically mess with to get back at my wife, or something. Meanwhile this sweet nurse is trying to console me, saying how much she loves me and my wife and our story and how we are both so sweet. But in my warped reality, her words turned extremely mocking and sarcastic; "Oh, you and your wife are SOOOOOO sweet" etc. And then I was hallucinating that in a side room of the gym there was a dance studio and a bunch of overweight Asian women walked past me and into this dance studio. Next thing I know I am hearing thumping bass that I identify as that "I Like Big Butts" song. And of course I am still stuck on this drat slowly moving stretcher car thing that I can't control. Eventually my rolling stretcher rolls me right down a small flight of 4-5 stairs at the corner of the gym and gets stuck with me kind of propped up at a 45 degree angle. I remember spending what felt like hours wondering when they would get me, how they were gonna get my stretcher up these stairs, and whether they would get in trouble for smuggling me from the ICU to this weird place. I must have fallen asleep at some point because then I was half conscious and back in the ICU, but there was an amazing auditory hallucination ringing out again and again as I struggled to gain consciousness. It was like a piercing, crystalline guitar chord. Extremely unearthly and pure sounding, and it kept hitting me and blasting through me at sort of random times. Then I started to figure out a kind of rock music going on underneath it, and finally my brain came up with this idea that it was a pop band playing a concert somewhere in Toronto that I was hearing, and my evil nurse had tuned a radio to it and was playing it loudly in my room. I thought I overheard her saying how much she loved this band and that her son was at the concert. And then I figured out that the band I was hearing was an alien force that had come to brainwash our youth with this crazy music, and that they had evil intentions, and that my nurse was somehow deeply involved. I ended up being extremely afraid of that nurse for days after, even though the insanity of these hallucinations made them impossible to believe after they were over. I think I just described an episode of ICU induced psychosis, actually. When I spoke about it later, my nurses told me they often had patients who wanted to have a phone so they could call 911 and get rescued from their nurses. Turpitude fucked around with this message at 23:55 on Feb 17, 2015 |
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Feb 17, 2015 23:51
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Was the Bronchiolis Obliterans a common complication of a lung transplant or was it just something that happened completely unrelated?
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Feb 18, 2015 03:01
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Turpitude posted:When I spoke about it later, my nurses told me they often had patients who wanted to have a phone so they could call 911 and get rescued from their nurses.
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Feb 18, 2015 03:31
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I'm so glad you're doing well, Turp. Reading how well you were soldiering through in the beginnings of the last thread helped keep me able to go on recovering from my garbage (the disease formerly known as Wegener's granulomatosis). I hope you can write that memoir man, as yours is some inspiring poo poo.
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Feb 18, 2015 04:56
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I din't see your earlier threads, but drat man, that's a hell of a thing to pull through, I'm glad tou're doing well. Have you had many issues with Graft vs. Host nastiness? I donated bone marrow to somebody a few years ago, and apparently it's basically unavoidable.
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Feb 18, 2015 05:28
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Graft Vs Host is kind of a bone marrow only thing. Solid organs you worry about rejection(host vs graft)
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Feb 18, 2015 07:50
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Bum the Sad posted:Graft Vs Host is kind of a bone marrow only thing. Solid organs you worry about rejection(host vs graft) It strikes in other places, too. 
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Feb 18, 2015 11:23
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