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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. What if your next of kin is lovely, either super religious, or super "you should be buried with the body you got!!!" types? I'm on the list in my state but it still makes me anxious that my Very Nice relatives will want me to stay whole, or whatever. I know you're in Canada and I'm in US so it's obviously different :\
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May 7, 2015 23:27
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Thin Privilege posted:What if your next of kin is lovely, either super religious, or super "you should be buried with the body you got!!!" types? Your next-of-kin will be asked whether to donate your organs, and if they say, "Oh, no, Thin Privilege's body has to remain intact for the afterlife!!", your organs will not be taken out of said body.
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May 8, 2015 01:52
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This whole thread was incredibly scary to read, especially all the kind of stuff that can go wrong or did go wrong. But at the same time it was really inspiring to read your story. I really hope that neither me nor my family ever come into the same situation, but i am glad to know that people can come out of such a mess and still be positive thinking persons. Did you always have this attitude towards life or did your philosophy change over the course of the last few years?
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May 8, 2015 09:23
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I'm very very pleased to see that you are still around and doing so well. When I read your last thread I just lurked and got very worried when it went quiet. It was around that time, I think, that a girl I went to school with finally succumbed to her CF. My school friends were a close group even though I lost touch with her in later years, and it was really sobering to read your stories. Best of luck with everything that is to come 
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May 9, 2015 18:43
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BLerchg posted:This whole thread was incredibly scary to read, especially all the kind of stuff that can go wrong or did go wrong. But at the same time it was really inspiring to read your story. I really hope that neither me nor my family ever come into the same situation, but i am glad to know that people can come out of such a mess and still be positive thinking persons. I actually struggled with depression from high school until my early 20s-very common for people with CF. I was extremely lonely and constantly feeling sick. I came close to killing myself a few times. It was only with a lot of hard work and support that i was able to break away from it and pursue transplant. It took a few years for me to reach the point I was willing to fight to stay alive. During that time a very special goonette was my lifeline. She flew from London, England to Vancouver BC, Canada to spend some time with me. Then later when my lungs really failed and I was in Toronto trying to get on the transplant list she visited me again and gave me another boost. She proved to me that there were things worth looking forward to in life! Then not much later I met my wife to be, and had something truly concrete and real to focus my hopes and dreams on. ineptmule posted:I'm very very pleased to see that you are still around and doing so well. When I read your last thread I just lurked and got very worried when it went quiet. It was around that time, I think, that a girl I went to school with finally succumbed to her CF. My school friends were a close group even though I lost touch with her in later years, and it was really sobering to read your stories. Yeah, I have lost way way too many friends to this loving disease.
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May 9, 2015 19:54
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http://www.bbc.co.uk/news/health-32755065
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May 17, 2015 18:31
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zonohedron posted:Your next-of-kin will be asked whether to donate your organs, and if they say, "Oh, no, Thin Privilege's body has to remain intact for the afterlife!!", your organs will not be taken out of said body. Seriously? Because I went out of my way to contact the state to be on the list. Also turp pls keep us updated, especially with pics 
Thin Privilege fucked around with this message at 19:54 on May 19, 2015 |
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May 19, 2015 19:51
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How much time did you spend thinking about your mortality when things were at their worst, and how much time do you spend on it now? Did you feel better trusting your doctors, or did you always make sure to research and understand each new procedure and medication? Thanks for sharing and congratulations on being alive!
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May 20, 2015 04:38
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Congrats on the little Turpling! I hadn't been to A/T in a year, wondered how you were, and now--a daddy!
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May 20, 2015 13:31
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Here's a pic of our daughter I will make an effort post next ~.~
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May 22, 2015 23:02
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That's my mutation, the something Delta 508 something something. Most common one! That means that for the majority of CF patients we might finally have an effective cure. I have been paying attention to these treatments since they were first theorized! To see my disease being conquered in my lifetime is something I have always hoped for but never entirely believed would happen. To see it happening gives me immeasurable joy! I know several people with CF kids who I am so, so happy for. Thin Privilege posted:Seriously? Dead bodies have no rights, if your next of kin says not to harvest your organs then the doctors simply won't do it. Sucks, but that's how it will be until we have an opt-out system instead of the current opt-in one. extra stout posted:How much time did you spend thinking about your mortality when things were at their worst, and how much time do you spend on it now? Did you feel better trusting your doctors, or did you always make sure to research and understand each new procedure and medication? You ask some great and complex questions, and I have procrastinated replying for that reason Thinking about mortality was constant in the years leading up to my first transplant. I was extremely depressed and my impending death was always on my mind. All day every day. I turned to video games to turn my brain off for months at a time because being active was impossible with how sick I was. And I just kind of held on for a while, then got some therapy and managed to pull myself out of that mental hole. When I finally got the Swine Flu in 2010 and went on oxygen, I think I really surprised my doc by telling him I wanted to go for the transplant in Toronto. I think I had convinced him pretty well that I had given up on myself in the years prior.Oddly enough I didn't think about my death very much before the second transplant. I faced it as a likely possibility and kind of put it out of my mind. Still, I said goodbye to my mom and my wife several times before major operations. I wasn't necessarily afraid of dying when we said goodbye. My wife and I had a solid understanding that whatever happened would happen and that she would be okay. After the second transplant, my soul was still half in the land of the dead, my emotions went absolutely bonkers, and I wept for days with horrible thoughts/visions of death. I was also wracked with survivor's guilt. It took a long time to pull out of that PTSD. Today I have reached and possibly surpassed my prognosis. I am in uncharted territory now and I actually make an effort not to think about it. I don't expect to live a long time, and yet there is no sign of me slowing down! Because we have a baby on the way, we do have to talk about it though, and I find it extremely difficult. In some ways, scarier than before. To your second question, my wife and I both became experts on everything that had to do with me. I trusted my doctors because I had no choice, really, but also out of sincere respect. A number of mistakes were made over my 6 months in the ICU, sometimes the same mistake more than once, but that is the reality of being in that place for so long with staff constantly rotating. Adena became my guardian and made sure they didn't gently caress anything up too badly. Khazar-khum posted:Congrats on the little Turpling! I love when goons say that, they thought about me a year later... I love all you guys so much. You've supported me through two transplants now!
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May 22, 2015 23:35
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Woah. Glad to hear from you, Turp! I saw this thread bumped back up and had a momentary chill, thinking "please don't be dead, please don't be dead.." As I made my way to the end. Congrats and keep on living to the fullest!
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May 23, 2015 14:26
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Super sad question: what are the kid's odds of having CF?
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May 24, 2015 17:21
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Parahexavoctal posted:Super sad question: Hard to calculate but extremely unlikely. If you look back at my posts, my wife has had genetic testing. There are thousands of mutations of CF but they test for the most common 99.5%, and my wife is clear! We are both a little stressed about it (so much bad poo poo has happened to us that it is hard not to expect the worst) but I expect us to be relieved when our daughter is born without CF. bonus: recent article about me from the local newspaper. They got a bunch of stuff wrong (the dude didn't seem to get that I have had two DOUBLE lung transplants) but it is still nice http://www.saanichnews.com/news/304640621.html
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May 24, 2015 19:09
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The other day I was thinking about something you might be able to answer for me: the absurdity of breathing from your face (albeit poorly) while also being hooked up to ECMO. Aside from the drugs, trippy dreams, and other awful components, during your more lucid times, did you ever feel like "this is just plain weird"? It would have to rank up there with anything else done in your body not entirely of your own will. Like, our brains can comprehend and accept outside technological assistance but it'll never feel quite organic.
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May 26, 2015 20:34
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Sorry for ignoring thread for months. Here is something I whipped up today edit: no clue how to timg an attachment. its my thread and I can tablebreak if I want to!
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Jul 22, 2015 03:26
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Does it count as a bowel obstruction if it didn't require surgery, just unreasonable amounts of laxatives? Cause I think I almost have diagonal bingo.
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Jul 22, 2015 06:13
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Yo turp and beckyogg, dunno if you've seen this in your CF internet travels, but this is a doco on a girl who was in my year at school who has CF, and particularly follows that period you mentioned earlier of leaving the family nest and trying to manage treatment on your own: http://www.nzonscreen.com/title/an-abbreviated-life-sarahs-story-living-with-cystic-fibrosis She always kept really quiet about CF at school so while we knew all she had it and had seen the medical stand by her bed, it was kind of out of sight out of mind - particularly sad when she explains why (which as adults is a no brainer but as teenagers we were pretty clueless). One very cool development since the documentary was filmed in 2008 is that her mum (who from all accounts is a gung ho CF campaigner and is quite involved with the CF community and CF research here) is working with one of our top CF specialists on clinical trials currently underway for a new drug that melts some of the mucousy crap away (http://www.nzherald.co.nz/business/news/article.cfm?c_id=3&objectid=11330879). They went out to look for funding from small time investors and almost doubled their target which is awesome; and hopefully the trials go well and it can start being used properly.
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Jul 22, 2015 09:58
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I've been meaning to post in this thread for a while, because Turp is my hero. Truly inspiring to me that you keep going through everything.beckyogg posted:Does it count as a bowel obstruction if it didn't require surgery, just unreasonable amounts of laxatives? Cause I think I almost have diagonal bingo. I've got the diagonal bingo if you count the hospital forcing me to use a wheelchair when I was perfectly capable of walking... I included number of PICC lines, sinus surgeries, and times I've broken my own ribs too!  So just a little background on me: I'm 24 years old, live in New York, and was diagnosed at 3mo old. Double F508 mutation. Most of my problems historically are sinus related more-so than lungs, until I turned 18 and was diagnosed with CFRD after losing over 30lbs and being unable to stomach anything anymore. Overall, I'm really pretty healthy for a CFer and I'm drat lucky for it. I also have a first cousin who is 10 who has CF, and she has far more digestive/nutritional problems than I do. Not really too much else to say at the moment except for what I came to post about... I got my Orkambi script yesterday! I'm excited to see if it actually helps me, but since my biggest issue is CFRD it might not be as big of a change as for other people. Also the side effects can be pretty serious, so I'm hoping I luck out there. I don't know how long it'll be until I actually have the meds to start on them, but I'm kinda impatient. I also get to do allergy tests for tobramycin and ceftazadime in three weeks because I had a sudden allergic reaction when I was finishing up two weeks of IV's in the beginning of June. Part of me would be kind of okay with a tobramycin allergy just so I can stop going deaf. One thing I was surprised to see support for in here is cannabis for CF. It works wonders for just feeling better in general and being active. I've also noticed that my FEV1 numbers tend to be higher in periods where I have a reliable supply, which I'd bet is just cause I'm so much more willing to go out and be active and exercise due to it. If any of my fellow CFgoons want to chat or anything, feel free to get in touch with me at my username @gmail! I've never really had much of a chance to talk to other people with CF except for my younger cousin.
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Jul 31, 2015 23:18
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Horizontal Tree posted:I've been meaning to post in this thread for a while, because Turp is my hero. Truly inspiring to me that you keep going through everything. I sent an email to you, but it may be lost in your spam box.
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Aug 2, 2015 17:13
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I got it and read it Friday night, I've just been busy so I hadn't gotten a chance to respond. I will this afternoon! I'm phone-posting from a family vacation.
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Aug 2, 2015 20:24
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I get and am starting my Orkambi tomorrow. I'm a little scared.
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Sep 15, 2015 01:34
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Horizontal Tree posted:I get and am starting my Orkambi tomorrow. I'm a little scared. Congratulations!! I hope it works wonders for you.
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Sep 15, 2015 02:19
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Hey guys, just wanted to post and say I am a daddy now! Our baby girl, Lilah Joan, was born on Saturday at 3:48am. She is perfect in every way!
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Sep 28, 2015 02:22
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 Goongratulations
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Sep 28, 2015 02:28
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Congrats Turp! Orkambi trip report two weeks in: side effects starting out were minimal, just a lot of exhaustion and a bit more drainage than usual. Other than that I can't really tell a difference.
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Sep 28, 2015 03:40
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Turpitude posted:Hey guys, just wanted to post and say I am a daddy now! Our baby girl, Lilah Joan, was born on Saturday at 3:48am. She is perfect in every way! Congrats! 
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Sep 28, 2015 06:35
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Congrats!! What wonderful news. Already been done but I don't even care,
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Sep 29, 2015 00:13
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Congrats! Enjoy every sleepless minute!
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Sep 29, 2015 00:53
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Congrats dude!
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Sep 29, 2015 01:07
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You are the man, man!
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Sep 29, 2015 05:50
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 thank you donor
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Sep 29, 2015 18:49
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Turpitude posted:
Matching patient wristbands?
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Sep 29, 2015 18:56
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Congratulations! You have a tiny person now, that's the weirdest and most awesome feeling in the whole world  Re the wristbands, I was really hoping you'd get the homebirth you both wanted, did you end up having to go to the hospital, or was this just a checkup later?
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Sep 29, 2015 19:18
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Turpitude posted:Hey guys, just wanted to post and say I am a daddy now! Our baby girl, Lilah Joan, was born on Saturday at 3:48am. She is perfect in every way! Congratulations to you and your wife, you're both amazing people.
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Sep 29, 2015 19:43
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Turpitude posted:
Best picture ever. Saw the new posts in this thread and my first thought was about the baby. Congrats to the Turps!
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Sep 30, 2015 01:24
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Sockmuppet posted:Congratulations! You have a tiny person now, that's the weirdest and most awesome feeling in the whole world We did not get the homebirth we were preparing for, wifey's blood pressure was climbing and we had to induce to avoid pre-eclampsia. Baby was still delivered vaginally, with no assistance from an OBGYN; just our midwife, a nurse, and me in the room with wifey. I got to catch baby when she burst out! So we spent 24 hours in hospital at the advice of our midwife and went home Sunday morning after everything checked out.
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Sep 30, 2015 04:44
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Turpitude posted:just our midwife, a nurse, and me in the room with wifey. I got to catch baby when she burst out! Ah, ok. I'm really happy that your concerns about lots of staff running in and out and unneccessary medical intervention didn't happen, though! Sounds like you had a great experience despite the induction. Congrats again, and best wishes for the future, all three of you
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Sep 30, 2015 18:31
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Turpitude posted:We did not get the homebirth we were preparing for, wifey's blood pressure was climbing and we had to induce to avoid pre-eclampsia. Baby was still delivered vaginally, with no assistance from an OBGYN; just our midwife, a nurse, and me in the room with wifey. I got to catch baby when she burst out! So we spent 24 hours in hospital at the advice of our midwife and went home Sunday morning after everything checked out. Did you have your catcher's mitt ready? Fresh babies are slippery. 
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Sep 30, 2015 18:48
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Aww congrats man, I'm so happy for you! Been meaning to comment on this thread but it has slipped my mind. Glad things are going great.
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Sep 30, 2015 18:58
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