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| Thinking of getting a standalone freezer | |
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| Tweet Topic Started: Oct 23 2013, 02:48 AM (1,171 Views) | |
| jon-nyc | Oct 27 2013, 04:34 AM Post #51 |
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Cheers
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Thanks. It's hard to tell exactly when it may happen. I've been approved for transplant at Columbia-Presbyterian but not 'activated' as I'm not sick enough to have a lung allocation score that would put me in the ballpark for a transplant. But the decline is pretty fast - my lung function was 24% a year and a half ago and 15% today. 15% makes you effectively disabled. Even Larry could kick my ass now. |
| In my defense, I was left unsupervised. | |
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| Axtremus | Oct 27 2013, 05:41 AM Post #52 |
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HOLY CARP!!!
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Knew it's coming ... yet still hard to process with every update. The typical "get-well" wish seems so vacuous at this point. I hope there there will continue to be peace and strength within you to face what's coming, and confidence/faith that comes what may the people you care about will be OK. |
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| Klaus | Oct 27 2013, 08:06 AM Post #53 |
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HOLY CARP!!!
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Judging from their website, Columbia-Presbyterian seems to be a very good place for lung transplants. This must be really tough. Given the short history of lung transplants, it seems that in one aspect time is working in your favor, because presumably scientific progress in that field is rather rapid, such that presumably survival rates etc. are not applicable to new patients. |
| Trifonov Fleisher Klaus Sokolov Zimmerman | |
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| John D'Oh | Oct 27 2013, 08:12 AM Post #54 |
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MAMIL
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+2. |
| What do you mean "we", have you got a mouse in your pocket? | |
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| AlbertaCrude | Oct 27 2013, 08:57 AM Post #55 |
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Bull-Carp
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Jon, I didn't realize that it was that close either. |
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| Horace | Oct 27 2013, 10:01 AM Post #56 |
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HOLY CARP!!!
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Ignore this if it's too personal, but what's wrong and what's the prognosis, Jon? |
| As a good person, I implore you to do as I, a good person, do. Be good. Do NOT be bad. If you see bad, end bad. End it in yourself, and end it in others. By any means necessary, the good must conquer the bad. Good people know this. Do you know this? Are you good? | |
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| Riley | Oct 27 2013, 01:16 PM Post #57 |
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HOLY CARP!!!
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Wow, jon, I had no idea you needed a lung transplant! ![]() Is it emphysema? |
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| jon-nyc | Oct 27 2013, 03:33 PM Post #58 |
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Cheers
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Not at all. I've posted about it here before. In 2008 I was diagnosed with an obscure genetic disease called Alpha 1-atitrypsin deficiency (which is more of a description than a name). The short and simplified version is that I'm missing a protein that performs a vital role in protecting your lungs from impurities. Thus people with this condition generally get emphysema, usually in their 30s or 40s. Its been called 'genetic emphysema' before. As for prognosis, different people have different outcomes and rates of progression. Mine has been particularly rapid since I was diagnosed - in 2008 I had 40% lung capacity, now I'm down to 15%. (even that is a simplification, there are many ways to measure lung function, but that is the metric using the most common proxy for overall function) So in my near future is a lung transplant. That should restore my lung function and quality of life, at least for a while, however lung transplant recipients generally have middling to poor prognoses. As of today, the median life expectancy of a lung transplant patient ('survival half-life', in the literature) is about 6 years. As Klaus notes, this is a dynamic area of medicine, and results are improving all the time. In fact, there is a material difference in survival statistics from the 1995 tx cohort to the 2000 cohort, and from the 2000 cohort to the 2005. I also have real reason to expect to be on the better side of the average - I will be a relatively young tx patient, and am otherwise healthy. Another thing to realize is the survival stats are lowered a lot by a certain percentage (maybe 15%) that don't ever recover from the surgery (i.e. they die in the first 90 days or so). An interesting statistic (to me anyway) is the 'conditional survival half-life' for those who get through the first year. For someone my age who makes it through the first year post tx, the 'survival half-life' is close to 9-10 years. But still, as an overall prognosis its not great - statistics suggest my odds of watching my son graduate high school are below 50%. (that, by the way, was a big part of my decision to retire at 44) So that's what the data says - of course there are anecdotes that are quite inspiring. I know a woman who in on year 21 of a double tx and is doing great (though she recently had a kidney transplant because the post tx drugs destroyed her kidney over time). Obviously she was transplanted 20 years ago when the stats were much worse. I wouldn't be surprised if someone who was transplanted last year will live 30 or even 35 years. So there is reason for one to be hopeful. |
| In my defense, I was left unsupervised. | |
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| brenda | Oct 27 2013, 03:38 PM Post #59 |
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..............
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I am very hopeful for your situation, Jon. As you note, your age is a plus, you have determination, and you have family support. I think you'll be on the high end of the numbers, the very high end. |
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“Weeds are flowers, too, once you get to know them.” ~A.A. Milne | |
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| Mikhailoh | Oct 27 2013, 03:46 PM Post #60 |
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If you want trouble, find yourself a redhead
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Greatly in your favor is you are smart enough to stay in compliance, which is a HUGE HUGE HUGE factor in these things. |
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Once in his life, every man is entitled to fall madly in love with a gorgeous redhead - Lucille Ball | |
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| AlbertaCrude | Oct 27 2013, 04:45 PM Post #61 |
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Bull-Carp
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Jon, I concur with Brenda and Mik. |
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| Horace | Oct 27 2013, 05:05 PM Post #62 |
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HOLY CARP!!!
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Thanks, Jon. Please keep us up to date with any developments. |
| As a good person, I implore you to do as I, a good person, do. Be good. Do NOT be bad. If you see bad, end bad. End it in yourself, and end it in others. By any means necessary, the good must conquer the bad. Good people know this. Do you know this? Are you good? | |
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| jon-nyc | Oct 27 2013, 05:26 PM Post #63 |
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Cheers
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Thanks folks. I appreciate it more than you know. |
| In my defense, I was left unsupervised. | |
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| brenda | Oct 28 2013, 08:41 AM Post #64 |
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..............
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On the down side, you have some of the most annoying friends in the whole world, but what'cha gonna do, eh?! ![]() At least we're consistent and persistent. There is that. |
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“Weeds are flowers, too, once you get to know them.” ~A.A. Milne | |
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| Jolly | Oct 28 2013, 09:52 AM Post #65 |
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Geaux Tigers!
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Young, compliant patient...that makes a world of difference. Yeah, at least ten years. And the way things are moving in that side of the world of medicine, who knows what will happen tomorrow? Here's hoping a good set of lungs is available soon. |
| The main obstacle to a stable and just world order is the United States.- George Soros | |
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| jon-nyc | Oct 28 2013, 09:57 AM Post #66 |
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Cheers
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Thanks. I'll drink to that while I still can! |
| In my defense, I was left unsupervised. | |
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