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http://news.yahoo.com/chile-leader-visits-ailing-14-old-wants-end-215510390.html The article is about a 14-year old Chilean girl who wants Euthanasia because she has CF. You have obviously fought quite a bit to stay alive with CF, so what do you think of this? IAmThatIs fucked around with this message at 14:07 on Mar 2, 2015 |
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Mar 1, 2015 22:40
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Vertigo Ambrosia posted:Was the Bronchiolis Obliterans a common complication of a lung transplant or was it just something that happened completely unrelated? It's basically chronic rejection and pretty much inevitable for lungs.
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Mar 2, 2015 07:27
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IAmThatIs posted:http://news.yahoo.com/chile-leader-visits-ailing-14-old-wants-end-215510390.html I support death with dignity but her age makes it complicated. I don't know the wishes of her parents or the extent of her condition. Cystic Fibrosis is an incredibly variable disease. They say it 'used to' be a childhood disease, but it can still be extreme enough to be lethal to some little ones. As an example from my own life, I know a man with CF who was born in 1969. He only needed his first transplant in 2011. Meanwhile my sister was born in 1977 and her condition was severe enough that she didn't make it past the age of 6.
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Mar 3, 2015 16:48
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Oh yay! I remember your other threads! I am happy to see you are doing well! I hope you knock your wife up hard cause I bet she'd be an awesome mom. You would make good parents! Crusty Nutsack fucked around with this message at 11:22 on Mar 4, 2015 |
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Mar 4, 2015 11:18
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I was sad when I would look at a/t and would see your thread hadn't been updated in forever. This is so awesome, you are awesome, keep being awesome. Thin Privilege fucked around with this message at 05:29 on Mar 6, 2015 |
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Mar 6, 2015 05:19
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Turpitude posted:I support death with dignity but her age makes it complicated. I don't know the wishes of her parents or the extent of her condition. Cystic Fibrosis is an incredibly variable disease. They say it 'used to' be a childhood disease, but it can still be extreme enough to be lethal to some little ones. As an example from my own life, I know a man with CF who was born in 1969. He only needed his first transplant in 2011. Meanwhile my sister was born in 1977 and her condition was severe enough that she didn't make it past the age of 6. So your parents already knew they were carriers. Did they give any thought to things like adoption? Or did they make a conscious decision to roll the dice again? Do you have any other siblings? Do you know how they took your diagnosis given that it was their second time around and (I assume) an informed decision? Any "regrets" on their part or would they do things differently? I'm interested in this type of decision making process when there is such a high chance of something going wrong. I think the stakes are much lower nowadays given the availability of early genetic testing.
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Mar 6, 2015 07:14
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potatoducks posted:So your parents already knew they were carriers. Did they give any thought to things like adoption? Or did they make a conscious decision to roll the dice again? Do you have any other siblings? Do you know how they took your diagnosis given that it was their second time around and (I assume) an informed decision? Any "regrets" on their part or would they do things differently? Second time around was indeed an informed decision. The math is that if both parents are carriers, they have a 25% chance of the child having CF. So they threw the d4 again and had a second child with CF. It was scary for them at first but I did much better than my sister from an early age. At birth, my doctors told my parents that I was going to outlive them. My mom was in a panic and immediately grieving when I was born with the disease, but things settled down and I had a pretty stress free childhood, with no hospitalizations until age 12 when I needed a sinus polyp removed. I grew up in the shadow of my deceased big sister and played with her toys, and her passing made my parents love and care for me even more. I guess I was what they called a rainbow baby? My mom says she has no regrets and wouldn't change a thing. I have a feeling my dad feels the same way. I look forward to giving them the gift of a grandchild, and hopefully I will outlive them both!
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Mar 7, 2015 03:33
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Small update: I did some sleuthing and discovered the identity of my second donor, whose lungs are currently in my body. He was a young man (a few years younger than me) who suffered a vehicle related head trauma and ended up donating his organs. He was kind and loving and his main bucket list wish was to get married and have kids, which I am pursuing. I truly wish I could offer the family some comfort, but I am not going to approach them other than to perhaps sending a second letter in late May, for my 2 year lungiversary. Also, my memoir writing prof said I should try to publish my second assignment, which makes me very happy!
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Mar 10, 2015 15:42
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First, congratulations. I just finished reading the memoir that you uploaded, and it is both moving and insightful. I'm just starting my career as a surgeon (not transplant) -- is there anything that your doctors said to you that you found particularly helpful or harmful?
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Mar 10, 2015 19:45
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I'm sure this has already been asked, but can you as an organ recipient be an organ donor?
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Mar 10, 2015 23:32
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Soylent Yellow posted:I'm sure this has already been asked, but can you as an organ recipient be an organ donor? Given that CF affects all his body's tissues, I'm not sure if his organs would be acceptable regardless of whether he'd received fresh lungs. (I'm also not sure about blood donation.)
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Mar 10, 2015 23:56
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i feel bad for just smoking a cigarette
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Mar 11, 2015 02:58
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I'm glad you're doing well, it's always nice to see another CFer surviving and living well despite the crap that we have to wade through. Before the new lungs, did you find that stuff that irritated normal people's lungs also irritated yours, like pollen or mildew? I'm beginning to suspect that my parents' house may be full of mold, because I keep feeling crappier whenever I go visit them, but I've never really encountered mold in any other circumstance where I could do a comparison. Also, sorry to pump you for information, do you have any CF forums or whatever that you frequent that was more inclined toward adult patients than towards parents? I don't know about you, but I find most online communities that have the parents of CFers involved start to skew heavily towards manic hopefulness and constant "God Bless!" and "praying for our child!" and "every day is a blessing", which rubs me the wrong way for various reasons.
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Mar 22, 2015 03:24
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beckyogg posted:I'm glad you're doing well, it's always nice to see another CFer surviving and living well despite the crap that we have to wade through. Hey beckyogg! Glad to see you are still kicking too! It's tough to say whether pollen or mildew irritated my lungs, since I was coughing all the time anyway. I am not sure how much mold I was exposed to. There are definitely small amounts of mold in my house but afaik I've never had problems with it. If you are noticing a correlation between lung gunk (or just feelings of fatigue/illness) and your parents house then you should probably trust your body, though. Maybe have a specific room that is cleaned and bleached, and buy one of those HEPA air filters to run full time around your visit. The only CF forums I visited was a few years ago, but they were on livejournal and not *that* adult, but was parent free. http://cystic-fibrosis.livejournal.com/ It looks kinda dead now, though. There may be some facebook groups... my wife is in one for wives of people with CF. I dunno about reddit. If there isn't one, I would be up for starting a forum with you  I have lots of contacts I could drag in to post a thing or two.
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Mar 22, 2015 19:00
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Hey Turpitude, I read your incredible old threads and tried to find them again recently but couldn't. Just to chime in and say that I'm so, so glad you're still here and doing well! You're an inspiration man.
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Mar 23, 2015 20:22
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TURP!  Glad to see you're still kicking rear end and taking names. Like others, once the original thread didn't get updated for awhile, I assumed the worst. I've never been so happy to be wrong.
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Mar 25, 2015 04:19
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Tomberforce posted:Hey Turpitude, I read your incredible old threads and tried to find them again recently but couldn't. Just to chime in and say that I'm so, so glad you're still here and doing well! You're an inspiration man. some texas redneck posted:TURP! Thanks guys! It's very good to be alive. I have a link to the old thread in the OP of this one, not sure if works. --- I have published my second and third memoir assignments to medium.com here: https://medium.com/@jreimer23/ They both tie in with my transplant experiences. I am going to seek publication for the second one though I need to work on it some more. The third is getting peer reviewed with my classmates tomorrow. I wrote that one in a very short amount of time and was really sick. It needs some fleshing out.
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Mar 25, 2015 05:02
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Turpitude posted:I have published my second and third memoir assignments to medium.com here: https://medium.com/@jreimer23/ You are incredible. I don't think I can say anything else.
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Mar 26, 2015 02:45
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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. Turpitude posted:
gently caress man. In 2012 I was in the hospital for a month and ended up having surgery on my left lung. I had one of those loving things--a chest tube--and I was in so much pain the maximum dose of dualadid did nothing for me. I was literally so miserable I more than once thought that dying might have been better... All this is to say, you are an incredibly strong person for having endured all of that and simultaneously stayed so positive. You're literally God like in my estimation for this. Edit: Your first transplant developed popcorn lung. Weird. ZombieLenin fucked around with this message at 04:19 on Mar 26, 2015 |
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Mar 26, 2015 04:13
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Jeherrin posted:You are incredible. I don't think I can say anything else. Thank you. If you have any ideas of things I should write about, let me know. ZombieLenin posted:gently caress man. In 2012 I was in the hospital for a month and ended up having surgery on my left lung. I had one of those loving things--a chest tube--and I was in so much pain the maximum dose of dualadid did nothing for me. I was literally so miserable I more than once thought that dying might have been better... Haha, thank you. And yeah, "popcorn lung" is the same condition, bronchiolitis obliterans, but I can assure you all that I was *not* huffing microwave popcorn between transplants. The only thing worse than having a chest tube is having it pulled out. One time I was half awake and two doctors came into my room and decided to pull out two of them at the same time. First they pull what seems like 4 feet of thick tubing out of a small hole between your ribs, which feels like being stabbed with a spear in reverse, and then they haul on the stitches with all their might, leaving you with a puckered, burning injury tied in a little black bow.
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Mar 26, 2015 05:23
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Turpitude posted:I can assure you all that I was *not* huffing microwave popcorn between transplants.
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Mar 26, 2015 05:57
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Turpitude posted:
OP have you considered that we are all in The Matrix and these pictures are from when you "woke up?"
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Mar 26, 2015 12:57
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Have you seen this section of the Guardian before? http://www.theguardian.com/lifeandstyle/series/experience I'm sure if you emailed them they'd be pretty drat interested in your story. I've no idea if you have to write it yourself or if they just interview you but it is worth checking out.
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Apr 2, 2015 01:39
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Turpitude posted:The only thing worse than having a chest tube is having it pulled out. One time I was half awake and two doctors came into my room and decided to pull out two of them at the same time. First they pull what seems like 4 feet of thick tubing out of a small hole between your ribs, which feels like being stabbed with a spear in reverse, and then they haul on the stitches with all their might, leaving you with a puckered, burning injury tied in a little black bow. Huh. I had four of those originally and the main discomfort was them poking the inside of my back, which seemed like a constant but mild back pain and made sleeping harder. At one point (a week after the surgery or so? maybe, who knows) I even told that I don't need any pain medication because I wasn't hurting anywhere and didn't want to swallow any more pills. Not sure if they obliged, or if I had any IV pain killers at that point. Can't even remember whether this was before or after the tubes were pulled out, but in any case that was more weird and fascinating than uncomfortable. Some time (hours, days? it's all a blur) after the four were removed, they thought I hadn't been perforated enough and inserted one through my back. Didn't mind it going in or out. Now bronchoscopy, that's horrible. Mainly because I have a very sensitive throat.
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Apr 6, 2015 11:05
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such a strange t shirt... what could it mean?  
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Apr 15, 2015 20:09
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Congrats! That's so awesome that you've managed to catch pregnant! Now you're going to have to figure out how to child-proof everything and hide your meds in a lockable cabinet. Good luck with your reproduction.
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Apr 16, 2015 02:53
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Yay! 
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Apr 16, 2015 02:55
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Thanks guys We got pregnant on the first try with ICSI. I had to get my testicles biopsied to retrieve the sperm which was very painful, but it was even worse for Adena because the hormones were not kind to her! We are very lucky to not have to do that again. We also have several frozen, high quality embryos if we ever want to make another!
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Apr 16, 2015 04:52
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Congratulations, Turp! I was glued to your old thread, so it's awesome to see that things are finally going your way
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Apr 16, 2015 12:57
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Yay! Now you have to start hanging out in the preggo thread 
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Apr 16, 2015 20:58
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Preemptive welcome to the pregnancy and then parenthood threads! I had to read your shirt twice to get it. Nice job for the both of you!
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Apr 20, 2015 00:51
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Turpitude posted:Thanks guys Congratulations Turp. Sorry about your balls.
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Apr 20, 2015 02:44
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That is so awesome!!! Congrats!!
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Apr 20, 2015 04:04
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Dick Trauma posted:Congratulations Turp. Sorry about your balls. Thank you Dick Trauma, it means a lot coming from you
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Apr 20, 2015 05:32
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This is a cool thread, and I just want to thank you for the glorious imaginative exercise it was to think about almost shedding your mortal coil to the hallucinated sound of IIIIIII LIKE BIG BUTTS AND I CANNOT LIE Now I know what I want to be played at my funeral. Keep breathing that sweet, sweet air OP.
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Apr 22, 2015 10:50
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This is gonna sound like a weird question but you already answered anything else I would have asked: So, obviously if this is too personal ignore me, but if you don't have a vas deferens does that mean you basically ejaculate liquid with no sperm in it? Is that a noticeably different colour or texture to semen with sperm? Aside from any of that congratulations, and you have prompted me to double check my organ donor registration since I'm not sure if it's valid if my driving license with it on has expired. Obviously I hope I don't randomly die between now and getting a new license (or for some considerable time after that) but if I do it ought to at least have a chance of contributing to the continued existence of someone like you. My blood is garbage to donation people but I bet I have some usable bits in here somewhere.
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Apr 29, 2015 05:29
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loki k zen posted:This is gonna sound like a weird question but you already answered anything else I would have asked: The most important thing re: being a donor is letting your next of kin know your wishes. You want them to be like, "our dead son always did say he wanted to be a donor" if the time comes that they have to make that decision. I don't have any experience with other men's spunk other than what I've seen in porn so I can't speak to texture. But yeah, all I ejaculate is seminal fluid and it is clear rather than cloudy looking.
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Apr 29, 2015 19:25
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Did your wife undergo any genetic testing?
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Apr 29, 2015 20:52
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potatoducks posted:Did your wife undergo any genetic testing? Yep, she is clear of the most common CF mutations that make up approx. 99.5% of the disease population.
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Apr 29, 2015 21:25
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Turpitude posted:The most important thing re: being a donor is letting your next of kin know your wishes. You want them to be like, "our dead son always did say he wanted to be a donor" if the time comes that they have to make that decision. Thanks, I'll make sure my fiance and parents know to say that. Thanks for answering also. Sounds like this guy I dated who was infertile but idk what his deal was, not CF anyway.
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Apr 29, 2015 23:18
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