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Hey Goons! My name is James and I used to have a pretty crazy thread here, back in 2013 when I was trying to get my second double lung transplant. Things went downhill quickly and pretty soon you had my wife posting on my behalf as I lay near death in a hospital bed in the ICU. I ended up being in the hospital for 7 months, 4 of which were spent in the ICU, 96 days of which I spent on the ECMO artificial lung device. Remember me? Here's the old thread, not sure if you need archives for it: http://forums.somethingawful.com/showthread.php?threadid=3507641&userid=0&perpage=40&pagenumber=1 Would you like to go back even further? In 2006 I was terrified of my future; I thought I would never even make it to transplant, and I posted a thread in GBS about it. Believe it or not, GBS reacted with universal kindness and understanding and may be responsible for helping me get to this point. This one is definitely in the archives: http://forums.somethingawful.com/showthread.php?threadid=1853014 My wife, who saved my life, kept a blog going the whole time that a lot of people followed: http://breathtoblog.blogspot.ca/ we are still updating it to this day, though not as often. Lots of really good recent pictures of us on there! It's been 20 months or something since my second double lung transplant, which was on May 29th, 2013, and things are going very well! I'm home in Victoria, working on staying healthier than ever, Weird stuff that happened during my journey that you should totally ask about : -Extremely fast decline -Living across from the hospital and having to get an ambulance to get me across the snowy street -Getting put on ECMO on my birthday; being on ECMO for months longer than expected -"Overdosing" on dilaudid and verset -Tubes in my rear end, tubes down my nose, tracheotomy and tube in my neck -Half conscious, slowly bleeding out of an artery while a surgical guy tries to plug the hole with his finger -Completely insane hallucinations that I felt at the time were "prophecies" -Memory loss -PTSD Cool stuff that happened/is happening post transplant: -Donald Trump Gave Us $40 000 US (well, he gave it to my wife; I was laying half dead in the ICU) -Free personal training -Articles and radio interview -Getting audited and losing out on disability related benefits from being too healthy -Giving a Q&A at the Canadian Cardiovascular Congress in Vancouver -Giving a 30 minute speech in front of ~300 people at a Cystic Fibrosis fundraiser -Gardening, hiking some of the west coast trail -Trying to get my wife pregnant The other thing I am extremely happy about and looking forward to is that I am going to be taking a class on how to write a memoir from my old university, UVIC, which I had to drop out of due to my illness. I have always wanted to go back and get back into writing; I also want to turn my story into something I can possibly make a bit of money off of, but more importantly spread to the rest of the world to create more awareness and most importantly more organ donors! I love you goons so much. You guys have actually contributed to keeping me alive. Here are two of my favorite pictures from 2014, from a visit to Vancouver Island's West Coast Trail, my favorite place in the world and somewhere I dreamed about constantly during my illness:  
Turpitude fucked around with this message at 01:17 on Jan 12, 2015 |
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Jan 11, 2015 23:32
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I haven't read your previous threads, but OP this is awesome. Glad to see you made it somehow intact through 4 ICU months. I'd love to hear about your ecmo. Were you awake during it? Did they have you doing PT? How was the drive to breathe handled? What happened to the first transplanted set of lungs? Please also relate the finger in artery story.
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Jan 12, 2015 01:09
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Amara posted:I haven't read your previous threads, but OP this is awesome. Glad to see you made it somehow intact through 4 ICU months. To answer your questions out of order, my first set of transplanted lungs were awesome for the first year I had them. I gained a ton of weight and started riding bikes with my fiance, worked out at the gym all the time, and enjoyed food for possibly the first time in my life. Not having slime-filled CF lungs was a revelation--I didn't spend hours in the morning coughing anymore! and eventually we were able to get married. I danced the night away with my wife, feeling super good. The next morning my lung function was down by 35%; we were in disbelief and got new batteries. No dice. Assumed it was a blip from drinking and dancing the night before. Continued to watch it fall over the next few weeks while communicating back and forth with my transplant team; we had been planning on flying back to Victoria, BC, and the transplant team hesitantly told us it would be alright for me to go back. There were a few other factors: I also had a sinus polyp which was blocking my nose from breathing, so we assumed it had something to do with the problem and had already planned to have it removed in Victoria when we got home. In the end, it turned out to be a condition called Bronchiolitis Obliterans Syndrome and it is mysterious and deadly. I had the worst form of it which meant my lungs were being destroyed at a rapid pace. The transplant clinic in BC told me I would need to return to Toronto for another transplant assessment. ECMO ended up saving my life. I was awake and oriented on it and was indeed up and doing physiotherapy every day! I was ventilated and the docs here still consider ECMO to be an extremely fragile state, unlike in the UK where they have been having people awake and walking on ECMO for decades. Here is a little video we made that shows me in motion both before and after transplant! https://www.youtube.com/watch?v=fBZc5u190yI Finger in artery story: It was night in the ICU and I had a stitch come loose at the ECMO site where it plugs into the artery in my right shoulder. Think of a tube the size of a small hose being jammed into your flesh, then stitched into your artery. So while I'm laying in the ICU trying to stay alive like a fish out of water, drifting in and out of hallucinations and dreams and whatnot, the nurses keep trying to stop the blood pouring out of me with various compresses and tape and such. They are not allowed to mess with ECMO stuff because that is highly specialized equipment, so they were trying to stop the bleeding in their own way. I spend hours drifting in and out of consciousness, being woken intermittently by the feeling of blood dripping down my arm, calling the nurses, getting them to try to fix it. At some point they call in a surgical fellow to see if he can deal with it, and the guy decides he can solve the problem by plugging his gloved finger into the hole and holding it there, standing there awkwardly looking down at me while I half-consciously writhe about in the bed because it fuckin' hurts to have a finger jammed in an open wound. I don't know how long he was standing there like a doofus for, but what ended up happening was my wife walking into the room early in the morning to see a bunch of nurses trying hard to hide their concern, setting up a blood transfusion for me because I am super low on blood, and a surgical fellow with a finger in my shoulder. Having a bit of first aid experience, my wife asks them if they have tried a steri-strip to stop the bleeding, and it was like there was an inaudible DERP facepalm kind of moment as all the hospital staff looked at each other in shock. Then they got me a steri strip, I stopped bleeding, and with the help of the transfusion I pinked up again. Turpitude fucked around with this message at 04:06 on Jan 12, 2015 |
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Jan 12, 2015 01:36
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When I saw the thread title, I remember the old thread, and am instantly happy to see that you're doing well. So, what does your healthcare routine look like now that you have had a falling out with death and decided to move far away from that fucker's house?
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Jan 12, 2015 04:21
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Yay Turp you look fantastic, extremely pleased to see you're still alive and kicking. My first thought was 'nah that thread can't have been 2013!?' How time flies. Hope your incredible wife gets pregnant soon, you two certainly deserve that kind of happiness after everything you've been through.
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Jan 12, 2015 09:50
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How and why did Donald Trump give your wife $40k?
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Jan 12, 2015 15:25
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Holy poo poo, I've been following your old thread and thought about you as recently as last month. I figured you'd died. I'm glad you didn't die!
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Jan 12, 2015 15:44
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Very happy to hear that you are still around. These new lungs; what's the estimated lifespan on them? Should they keep going for a long time?
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Jan 12, 2015 16:03
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You have good taste in hiking trails. What part of the west coast trail did you do? Have you and your wife done genetic counseling in preparation for trying to have a kid?
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Jan 12, 2015 20:40
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Jeza posted:How and why did Donald Trump give your wife $40k?
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Jan 12, 2015 21:44
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With so many close calls with death has this affected how you view an afterlife?
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Jan 12, 2015 22:37
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cheese eats mouse posted:With so many close calls with death has this affected how you view an afterlife? Seconding this, especially in relation to the hallucinations. Do you have any philosophical musings you'd care to share? Life after death, that sort of thing.
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Jan 12, 2015 23:08
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are you gay? (USER WAS PUT ON PROBATION FOR THIS POST)
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Jan 12, 2015 23:28
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Cemetry Gator posted:When I saw the thread title, I remember the old thread, and am instantly happy to see that you're doing well. My healthcare consists of taking a lot of pills and getting lots of exercise. I still have Cystic Fibrosis in all my other organs so I need enzymes to digest my food; they make up the bulk of my daily pill load. I take immunosuppressants morning and night; immuran, prograf, and prednisone. After the second tx I developed diabetes because of the high levels of prednisone, but now that I am down to a very low dose of 5mg/day, I no longer have to worry about my blood sugar but for a while there I was checking it 5 times a day. I also take a ton of vitamins. As far as other stuff goes I get bloodwork monthly to check all my levels. They monitor closely for white blood cell levels, CMV, that sort of stuff. Bambina posted:Yay Turp you look fantastic, extremely pleased to see you're still alive and kicking. My first thought was 'nah that thread can't have been 2013!?' How time flies. Thank you so much! We have definitely been through a lot of poo poo and deserve some sunshine in our lives. Jeza posted:How and why did Donald Trump give your wife $40k? Here is the story on how this all came about : I had to move to Toronto from Victoria BC again. I had to live close to the hospital which meant paying a lot for rent, and my wife couldn't work because she had to be my full time caregiver. My parents had already mortgaged everything they could for the expenses of living in Toronto for the first transplant. My dad had had a massive stroke so my mom needed to stay home and care for him. So we decided to fund raise online. While fundraising on Facebook we were contacted by people from out of New York who were starting a new fundraising website called http://www.fundanything.com/ . They told us they wanted to do an interview and put us on TV to raise some funds and get some traffic to their website. They sent a camera man out who interviewed Adena and I. They also phoned me to be on live TV while the video was airing in the States. This all amounted to nothing, as no one really donated to our campaign (I dont think their website got any traffic) and things stagnated for a while. But the producers of Fundanything kept in touch with us and a few weeks ago they told us that they would like to fly Adena to New York as part of a media event where Donald Trump would be giving us $5000, as well as donating funding to two other online fundraisers. We thought it could be a scam so we were very cautious about agreeing to this; we had to five them my social security number, etc. After a lot of hesitation, we decided it was worth it for Adena to risk being away from me for a day in order to publicize our story and raise funds for living in Toronto. They flew her down to New York and she refused to stay for any longer than was necessary. I think she spent one night in a hotel, got cabbed to Trump Tower and watched in horror as Trump threw a bunch of cash into the crowd and whatnot, and they sprung a surprise on her: the donation was for $40 000, not $5000. I still remember getting her call while I was laying there in the ICU, where she told me she had been given 40 grand. I thought it was some more delirium and quickly fell asleep again. Turpitude fucked around with this message at 05:55 on Jan 13, 2015 |
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Jan 13, 2015 02:51
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BlueGrot posted:Holy poo poo, I've been following your old thread and thought about you as recently as last month. I figured you'd died. Thank you, I'm glad I didn't die either! spog posted:Very happy to hear that you are still around. Well this is a very difficult question to answer. It haunts my wife every day. Re-transplanted lungs are still very uncommon and the data isn't great. They say the average (or median, I can't remember) survival time is 2 years, which for me is way too bleak an outlook. I think the data is skewed by all the people who die within the first 30 days of re-transplant. Right now I am extremely healthy and fit, but I was the same before my first set of donor lungs failed. So we struggle with the knowledge that our lives could become very terrible very fast. We try not to take anything for granted. If I have my way, I will outlive my parents and pets and get to raise a child with my wife. Engineer Lenk posted:You have good taste in hiking trails. What part of the west coast trail did you do? I have been doing one short section of the trail since I was a kid, from the narrows at Whyac (roughly halfway down the trail) to Clo-oose bay, which is about 1 hour's leisurely hike. We have a summer cabin there. This summer I hope to do half the trail, which should be convenient now that they have made the Nitinat narrows a starting/finishing point! We absolutely got genetic testing done. Adena is Jewish and has a range of predilections to be aware of; I have the most common form of CF, and she was tested for all the most common forms of CF which make up about 99.5% of the CF mutations they know about. cheese eats mouse posted:With so many close calls with death has this affected how you view an afterlife? HUGE SPACEKABLOOIE posted:Seconding this, especially in relation to the hallucinations. Do you have any philosophical musings you'd care to share? Life after death, that sort of thing. I have always been agnostic and had quite a bit of curiosity about death - I always have wondered what comes afterwords. While I was right on the knife's edge in organ failure I was having hallucinations that I truly believed were taking place in Hell. I was trapped and cold and constantly sick and vomiting in these hallucinations. There was brutal violence everywhere that I couldn't escape. I saw things that at the time I thought were extremely important "prophecies" that I couldn't shake and felt deeply troubled by in my waking hours. I have never been into Jesus but for some reason he was in one of my visions. I have thought about this stuff a lot since my close calls but I feel like it's impossible to see where the spiritual begins and the biological ends. I was in organ failure and on massive doses of sedatives to stop me from waking up in horrible pain. It's well known that the cocktail they had me on tends to give people ICU induced psychosis and PTSD, which is definitely what happened to me. But I still can't shake the power of what I saw. I guess the best I can say is that if I really did visit a form of Hell, it is not a place anyone would ever want to go. It was extremely awful and the PTSD I experience is still fairly strong, even after this much time. gently caress da Mods posted:are you gay? Only for organ donors!
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Jan 13, 2015 03:09
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Turpitude posted:We have set that money aside to use on university (Adena is a grad student) and IVF Is there something about your condition that means you have to use IVF?
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Jan 13, 2015 03:22
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So glad you posted. I was thinking about you just the other day. I am not a fan of Mr. Trump (like he cares), but now I am grateful to him on your behalf. Thanks Trump. Thump,
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Jan 13, 2015 03:25
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Skeesix posted:Is there something about your condition that means you have to use IVF? Men with Cystic Fibrosis are missing the vas deferens. It's just a weird thing that comes with the disease. In fact sometimes adult men end up diagnosed with (a mild form of) CF when they are infertile and can't figure out why. They would normally be able to get sperm out of my balls with a little needle but I had to make it difficult by having a collapsed epididymis. Nothing is ever easy with me! The collapse was probably from having massively swollen testicles post transplant. From all the water weight I had put on my scrotum was the size of a honeydew melon! So a few months ago I had to go in to hospital to have a urologist slice open my scrotum and they took "large chunks" (my doc's words!) out of both testicles. The fertility clinic thankfully got viable sperm out of this, but there is a further complication: men with CF have sperm that has low motility. So we actually weren't able to do IVF, we had to pursue ICSI. Now we have 6 little frozen embryos in the freezer at the fertility clinic. Maybe in a few months I will be able to let you guys know if I am gonna be a dad!
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Jan 13, 2015 03:59
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Awesome story and thread OP, good luck on your journey. 
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Jan 13, 2015 04:40
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Holy poo poo Turp. You're alive. I posted like crazy in your old thread explaining medical jargon as I was a transplant/ECMO nurse(in grad school now.) So happy for you man.
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Jan 13, 2015 05:03
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What a great thread to see! So glad to hear you're doing well Turp! Welcome back to Victoria. I'm assuming you're using Dr. Hudson? We were using him for awhile as well and have our rainbow baby sleeping soundly in the next room. He's amazing and his team are so friendly and accommodating as well. Fingers crossed this next journey goes as smoothly as it can for you.
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Jan 13, 2015 08:03
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As a person who will most likely need a new heart in 5 years or so, your story is compelling and heart-worthy (literally). Can you tell me what your doctors did for you to prepare for the transplant, not once but twice? My cardiologist has prepared me, but I'd like to hear it from someone who actually survived major organ donor transplantation, and has approached it with candor, honor and an amazing spirit. Are they allowed to tell you who's lungs you received? I hear it depends case-by-case. I am rooting for you! I love me some good happy threads.
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Jan 13, 2015 17:23
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Turpitude posted:Well this is a very difficult question to answer. It haunts my wife every day. Re-transplanted lungs are still very uncommon and the data isn't great. They say the average (or median, I can't remember) survival time is 2 years, which for me is way too bleak an outlook. I think the data is skewed by all the people who die within the first 30 days of re-transplant. Right now I am extremely healthy and fit, but I was the same before my first set of donor lungs failed. So we struggle with the knowledge that our lives could become very terrible very fast. We try not to take anything for granted. Do you have the option of getting another set of lungs in the future? Could you keep 'upgrading' every 2 years forever? (FWIW, I got a donor card because of you. I am also a lovely driver)
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Jan 13, 2015 17:57
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Hey OP, does your last name both start and end with an R? I think we were friends when we were little, except you went by Jamie then.
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Jan 13, 2015 19:06
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Turpitude posted:-Trying to get my wife pregnant Is this a good idea for someone who has spent the last decade battling a genetic illness?
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Jan 13, 2015 20:10
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I just read both your old threads (haven't gotten to the blog yet). I don't throw this around often, but you're one of those truly blessed people. You are simply loving amazing. Your wife is simply amazing. Your recovery and story are simply amazing. I just checked to make sure, but I am still an organ donor, and have been since the day I was 18 and a legal adult and could make those decisions. I can't say it enough: you're loving awesome.
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Jan 13, 2015 20:24
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Luvcow posted:Awesome story and thread OP, good luck on your journey. Thanks! Bum the Sad posted:Holy poo poo Turp. You're alive. I posted like crazy in your old thread explaining medical jargon as I was a transplant/ECMO nurse(in grad school now.) So happy for you man. Hey Bum! I always appreciated your inside information in the last thread. How are you these days? Keeping healthy? Got any cool ICU stories to share? Beachchica posted:What a great thread to see! So glad to hear you're doing well Turp! Welcome back to Victoria. I'm assuming you're using Dr. Hudson? We were using him for awhile as well and have our rainbow baby sleeping soundly in the next room. He's amazing and his team are so friendly and accommodating as well. Fingers crossed this next journey goes as smoothly as it can for you. So amazing to hear that! yes, Dr Hudson and Dr Graham. May I ask how many times it took for you to have your miracle baby? Slide Rule posted:As a person who will most likely need a new heart in 5 years or so, your story is compelling and heart-worthy (literally). Can you tell me what your doctors did for you to prepare for the transplant, not once but twice? My cardiologist has prepared me, but I'd like to hear it from someone who actually survived major organ donor transplantation, and has approached it with candor, honor and an amazing spirit. I have great news for you: heart transplants are waaaaay more successful than lung transplants! This is because the lungs are constantly in contact with the outside world. They have also been mastering heart transplants for much longer than lungs, so they have much more experience at most transplant centers. On the heart transplant list I expect your wait would most likely not be very long. You can expect to do rehab 3x/week and be in a state of constant readiness for your call. You may have to quit work and get a full time caregiver if your condition deteriorates. If you get extremely sick you could be put on bypass in hospital until your organ becomes available, and I don't see why with the current tech we have that you couldn't be on a machine indefinitely until your heart arrives. Bum the Sad would maybe know more about this; I think the main risk is bleeding out from the blood thinners. I do not know much about either of my donors, which makes me sad. I only know that my second donor was someone who died in Hamilton, a city not far from Toronto. As a recipient I had the option of sending letters to each of my donor families, and I did. They had the option to reply but never did so. spog posted:Do you have the option of getting another set of lungs in the future? Could you keep 'upgrading' every 2 years forever? Super hard question to answer. I don't want to put my family through the horror of my second transplant all over again. I feel I could survive it because I have survived so much crazy poo poo that I feel kind of invincible! But as far as I know there has never ever been a third double lung recipient. I also most likely have some lasting liver and kidney damage from the last go around, so who knows if I would even be viable for another one. I am hoping to hang on until some new tech becomes available. Maybe they will figure out how to handle bronchiolitis obliterans in the next year or two? It's hard to say what the future holds. I have lead a charmed life in the respect that medical advances have arrived in time to save my rear end. McGavin posted:Hey OP, does your last name both start and end with an R? I think we were friends when we were little, except you went by Jamie then. Yeah, I'm James (Jamie) Reimer, who's this? Arnold of Soissons posted:Is this a good idea for someone who has spent the last decade battling a genetic illness? I'm not sure if you are under the impression that I would pass on something genetically, or if you are questioning whether it's a good idea to bring a child into the world when their father might not live very long. Genetically speaking, it's extremely unlikely any child I have with my wife would have Cystic Fibrosis. Stranger things have happened, of course. As for the other part, it has been an extremely difficult choice, as you may imagine. My wife and I have both dreamed from an early age of raising children. One of my great drives to survive for all these years has been to raise a grandchild for my parents. After the first transplant the future was extremely bright and we expected a long, happy life together. Our dreams were quickly shattered after the wedding and we had to pick up the pieces after my second transplant. There is no doubt in my mind that we will be great parents; my wife's constant fear is that I will die and she will be left alone with an infant, or God forbid twins! She is an amazingly strong woman, though, and feels like she could handle being a single mother if I die later on. My other thought on the matter is that if I do die I know my wife and child will be loved and cared for by a lot of people, and that there are worse things than growing up without a biological dad. I would hope my wife would snatch up some other nice nerdy goon and make him our baby's daddy.
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Jan 13, 2015 20:37
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Turpitude posted:Yeah, I'm James (Jamie) Reimer, who's this? Haha, I thought so! It's Dave! Our dads were pretty close back when we were really little, so I came over to your house on Saltspring occasionally, and we went to Clo-oose together one time. I'm glad to see that you're doing well and I hope that your dad is getting better too.
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Jan 13, 2015 20:55
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Turpitude posted:Hey Bum! I always appreciated your inside information in the last thread. How are you these days? Keeping healthy? Got any cool ICU stories to share?  been grad school full time and haven't been in a hospital since June.quote:I have great news for you: heart transplants are waaaaay more successful than lung transplants! This is because the lungs are constantly in contact with the outside world. They have also been mastering heart transplants for much longer than lungs, so they have much more experience at most transplant centers. On the heart transplant list I expect your wait would most likely not be very long. You can expect to do rehab 3x/week and be in a state of constant readiness for your call. You may have to quit work and get a full time caregiver if your condition deteriorates. If you get extremely sick you could be put on bypass in hospital until your organ becomes available, and I don't see why with the current tech we have that you couldn't be on a machine indefinitely until your heart arrives. Bum the Sad would maybe know more about this; I think the main risk is bleeding out from the blood thinners.\ With most types of heart failure if you begin to deteriorate too much what we can do is install what's called a Ventricular Assist Device. It's a continuous flow pump(no pulsatility) we implant in your chest with an intake sewn into your left heart ventricle, and an outflow "tube" into your aortic arch, then we run a power/data cable down through your abdomen, make a nice little exit hole on the side of your gut and then close you up. So you're now a cyborg with an artificial heart ventricle, blood fills the failed LV, is sucked out and pump back out into your Aorta to replace the job of the failed LV that should be squeezing it out into your aorta. Once we tune you up you can go home, you just now have a power cable coming out of your belly and need to wear a fanny back/vest with your batteries/system controller(computer) at all times. Here's a good image of one of the more popular models. We implanted these often and Dick Cheney had this one too. It's called the HeartMate II.  They're amazing devices the problem is though is that it's a gamble. When you start deteriorating do you A) hope the transplant comes in time before you either die or get too sick for a transplant, get de-listed and then die or B) Risk the VAD surgery which could kill you and then wait another 6 months to get re-listed(gotta give a persons body time to recover from this operation before risking cutting them open again) If everything goes smoothly low the quality of life with one of these VAD's is amazing, you have people who are pale as a ghost and can't walk across the room without getting out of breath then they get their VAD implanted and you see them 8 months later when they get called in for a heart and they walk in look pink and amazing and are actually kind of sad-happy because they don't want to have surgery and feel lovely again. Anyway don't want to derail but I would like to reinstate how happy I am for you. I didn't think I'd get emotionally invested in some random Canadian rear end in a top hat on the internet but I did. So glad you're living well, I was worried what your quality of life was going to be. Bum the Sad fucked around with this message at 23:03 on Jan 13, 2015 |
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Jan 13, 2015 22:56
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Turpitude posted:
Of course! We had a very different issue and were able to conceive without any issue but my body wouldn't carry them to term. We went through 5 brutal miscarriages before we figured out I had an underlying heart condition and odd clotting disorder? Dr. Hudson listened to my concerns after no one else in the city would and investigated. SC injections twice daily of heparin did the trick. You sound like you've done a lot of thinking about the best and worst case scenarios for when you do bring a child into this world. You and Adena deserve to know that happiness together. I know I'm just a stranger on the Internet, but if you guys ever need or want to have another person to chat with, I'm here.
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Jan 14, 2015 06:29
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No question from me, just wanted to say way to go and I'm glad you're ok!
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Jan 15, 2015 19:54
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You know, just the other day I remembered your old thread and was wondering what happened to you. It's awesome to see that you're doing well!
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Jan 15, 2015 23:29
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Can you like, take a picture of all the pills you take in a day, or like a week or something.
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Jan 16, 2015 03:08
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SHISHKABOB posted:Can you like, take a picture of all the pills you take in a day, or like a week or something. Sure, I will do that tomorrow probably, and get around to writing some more stories. Thanks for the kind words as always, I'm glad you guys enjoyed the old thread
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Jan 16, 2015 06:12
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I'm happy to read your update, Turp! I followed your last thread and the blog. Very glad you're doing well and hope it continues for a very, very long time. Loved ones of people who are very sick often have difficulty readjusting to the idea that it's okay to do things purely for themselves. I hope Adena is doing well and indulging in hobbies or other things that make her happy. She's a selfless woman, but I hope she's squeezing in some of the positive sort of selfishness (and that you're spoiling her rotten).
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Jan 16, 2015 22:06
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IOU a photo of my meds still. I need to refill a prescription on Monday to make the picture more accurate! Here are some gross pictures to appease you all in the meantime: Staples after the first transplant:  Bipap a few months before my second transplant; I have no memory of this:  First few days in the ICU, I was intubated:  ECMO going into the artery at my shoulder. You can see here that the tube was bent, which led to the whole circuit being replaced later.  Multiple IVs, ECMO, Ventilator, and vital sign monitors:  3 out of 5 of my chest tubes, post second transplant:  My trach scar is deeper than most of the ones I have seen. You can also see a little bit of the ECMO scar on my right shoulder. 
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Jan 18, 2015 05:55
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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. I was also wondering, how isolating does it feel to have CF? I've heard that people with CF aren't really supposed to be around other people with CF due to risk of infection and man, that sounds kind of depressing. Granted, the internet and Skype probably helps a lot but still, it seems kind of sad to know that there are people that are physically dangerous to go near who are going through the same thing that you are.
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Jan 18, 2015 06:11
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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. Here's the centrimag Ventricular Assist Device for heart failure 
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Jan 18, 2015 07:39
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Is it something you encourage other CFr folk to do?
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Jan 18, 2015 20:19
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Turpitude posted:Hey Goons! My name is James and I used to have a pretty crazy thread here, back in 2013 when I was trying to get my second double lung transplant. Things went downhill quickly and pretty soon you had my wife posting on my behalf as I lay near death in a hospital bed in the ICU. I ended up being in the hospital for 7 months, 4 of which were spent in the ICU, 96 days of which I spent on the ECMO artificial lung device. Remember me? Here's the old thread, not sure if you need archives for it: http://forums.somethingawful.com/showthread.php?threadid=3507641&userid=0&perpage=40&pagenumber=1 [Ask] me if I give a poo poo, OP. (USER WAS PUT ON PROBATION FOR THIS POST) (USER WAS BANNED FOR THIS POST)
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Jan 18, 2015 21:25
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