BuffJim Posted December 6, 2019 Share #1 Posted December 6, 2019 My pulmonologist broached the subject today. He said if I need one, its got to be done by age 65, 8 years from now. He thinks I have early stages of the Pulmonary Fibrosis my father has. He did say treatment options are much better now than 12 years ago. But he thinks sometime in the next year or two, I should visit Mayo or Cleveland Clinic, so that if an acute situation arises they have established a relationship and can deal with me much better. There's also 2 new (wildly expensive) drugs that he thinks I should consider. He said its OK to wait to see if I stay stable for a while, but if lungs get worse I may consider them. My Dad takes one, and it is over 10,000 a month, which is more than he ever earned. But he doesn't pay much out of pocket. I'm not too stressed about it, because I've seen it coming, but still wasn't expecting him to bring these options up yet. 12 years ago my Dad went to Mayo, and they basically told him there's not much they can do. He had ten very good years after that, until his formal PF diagnosis 2 and a half years ago. 2 3 Link to comment Share on other sites More sharing options...
jsharr ★ Posted December 6, 2019 Share #2 Posted December 6, 2019 I give you permission to harvest a lung from RG. 1 2 Link to comment Share on other sites More sharing options...
donkpow Posted December 6, 2019 Share #3 Posted December 6, 2019 I can give you professional advice based on internet stuff. $200 please. 1 Link to comment Share on other sites More sharing options...
Prophet Zacharia Posted December 6, 2019 Share #4 Posted December 6, 2019 1 minute ago, jsharr said: I give you permission to harvest a lung from RG. 19 Foods You Can Regrow From Scraps Avocado. Don't throw away your avocado pits. ... Basil. Liven up pastas dishes, sauces, and pizzas, all for the price of one basil plant. ... Bok Choy. Cut off the base of a bok choy plant and place it in a bowl bottom-down. ... Cabbage. Grow your very own cabbage patch for cheap. ... Carrot Greens. ... Celery. ... Cilantro. ... Garlic Sprouts. RG Lungs 1 Link to comment Share on other sites More sharing options...
Prophet Zacharia Posted December 6, 2019 Share #5 Posted December 6, 2019 2 minutes ago, donkpow said: I can give you professional advice based on internet stuff. $200 please. You’ll just tell him to eat organic food and no sex. I just did that and will only charge $400 for a retreat. 1 2 Link to comment Share on other sites More sharing options...
Naomi Posted December 6, 2019 Share #6 Posted December 6, 2019 6 minutes ago, BuffJim said: My pulmonologist broached the subject today. He said if I need one, its got to be done by age 65, 8 years from now. He thinks I have early stages of the Pulmonary Fibrosis my father has. He did say treatment options are much better now than 12 years ago. But he thinks sometime in the next year or two, I should visit Mayo or Cleveland Clinic, so that if an acute situation arises they have established a relationship and can deal with me much better. There's also 2 new (wildly expensive) drugs that he thinks I should consider. He said its OK to wait to see if I stay stable for a while, but if lungs get worse I may consider them. My Dad takes one, and it is over 10,000 a month, which is more than he ever earned. But he doesn't pay much out of pocket. I'm not too stressed about it, because I've seen it coming, but still wasn't expecting him to bring these options up yet. 12 years ago my Dad went to Mayo, and they basically told him there's not much they can do. He had ten very good years after that, until his formal PF diagnosis 2 and a half years ago. I won't make light of your condition as I have had a long time affliction with respiratory issues as well. Tough decisions ahead. In my case, I think I would go the drug treatment route rather than transplant. Obviously more research would be required though. 1 Link to comment Share on other sites More sharing options...
BuffJim Posted December 6, 2019 Author Share #7 Posted December 6, 2019 4 minutes ago, donkpow said: I can give you professional advice based on internet stuff. $200 please. I'll give you $250 for expert advice. Link to comment Share on other sites More sharing options...
bikeman564™ Posted December 6, 2019 Share #8 Posted December 6, 2019 I hope that all works out for you My upper lobe of my right lung was removed. That was scary enough. 1 Link to comment Share on other sites More sharing options...
Prophet Zacharia Posted December 6, 2019 Share #9 Posted December 6, 2019 1 minute ago, Wilbur said: I think I would go the drug treatment route rather than transplant. Yeah, as a far less invasive intervention, meds are the way to go, for now. Maybe that will halt the progression and avoid the need for transplant. Fingers crossed. 1 Link to comment Share on other sites More sharing options...
BuffJim Posted December 6, 2019 Author Share #10 Posted December 6, 2019 1 minute ago, Wilbur said: I won't make light of your condition as I have had a long time affliction with respiratory issues as well. Tough decisions ahead. In my case, I think I would go the drug treatment route rather than transplant. Obviously more research would be required though. I'm expecting this to be a 10-20 year battle, fought along side with Diabetes type 2. Wouldn't expect to have to go on long term disability before retirement age. 2 Link to comment Share on other sites More sharing options...
Dottleshead ★ Posted December 6, 2019 Share #11 Posted December 6, 2019 Holy crap. Good luck DeathJim. Don't live up to your name. 2 Link to comment Share on other sites More sharing options...
donkpow Posted December 6, 2019 Share #12 Posted December 6, 2019 I know this is a tough decision and is one that can only be born by BuffJim. I only make light to allow the subject to be palatable. 1 Link to comment Share on other sites More sharing options...
groupw Posted December 6, 2019 Share #13 Posted December 6, 2019 I know a sister of a good friend had CF and had a lung transplant. She is in her early 20s. Aside from the CF, she is in good shape. She still had rejection complications. The drugs required almost put her on dialysis! It has been nearly a year of frequent hospital visits. But she is alive and long term prognosis is good. She would not be here if it weren’t for the transplant, the timing was that close. Given that you are Type 2 already, it might be weighing lung treatment vs dialysis. I’m hoping for the best for you! 1 Link to comment Share on other sites More sharing options...
Square Wheels Posted December 6, 2019 Share #14 Posted December 6, 2019 ? Link to comment Share on other sites More sharing options...
Randomguy Posted December 6, 2019 Share #15 Posted December 6, 2019 Wtf do you needs lungs for anyway? All the air is rotten and stinky, didn't you ever see 12 Monkeys? See the film, I don't know about the series. Ok, if you are determined to have lungs, how much are the anti-rejection drugs per month? Recovery? Prognosis? Canada? Another vote for keeping your own, everything on me sucks these days. Link to comment Share on other sites More sharing options...
BuffJim Posted December 6, 2019 Author Share #16 Posted December 6, 2019 1 hour ago, Randomguy said: Wtf do you needs lungs for anyway? All the air is rotten and stinky, didn't you ever see 12 Monkeys? See the film, I don't know about the series. Ok, if you are determined to have lungs, how much are the anti-rejection drugs per month? Recovery? Prognosis? Canada? Another vote for keeping your own, everything on me sucks these days. No idea. Ins would cover, but I haven’t poked around to see if we have a policy max. Link to comment Share on other sites More sharing options...
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