Comments on: Emotional Evening, and I’m not the One Getting New Lungs http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/ The daily quest to gain weight Sat, 04 Feb 2012 14:34:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Jesse Petersen http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-1051 Jesse Petersen Tue, 21 Sep 2010 11:15:00 +0000 http://www.cffatboy.com/?p=1646#comment-1051 Adorable, insightful, and wise - great comment, CG. Thanks for the encouragement. I'm pretty sure it will be a very long time down the road (if ever), but I'm such a planner and control freak, I can't not prepare for the possibility. If it doesn't happen, having $50k in a savings account or mutual fund isn't exactly a bad thing, eh? Rainy days of some sort can hit at any time and having that cushion will lower my stress exponentially and likely keep me healthier just from having that cushion alone. Beautiful's parents live ~10 miles away, so I'm sure meals and an extra helping hand won't be an issue at all if that time ever does come. Here's to making CF stand for "Cure Found," though! Adorable, insightful, and wise – great comment, CG. Thanks for the encouragement. I’m pretty sure it will be a very long time down the road (if ever), but I’m such a planner and control freak, I can’t not prepare for the possibility. If it doesn’t happen, having $50k in a savings account or mutual fund isn’t exactly a bad thing, eh? Rainy days of some sort can hit at any time and having that cushion will lower my stress exponentially and likely keep me healthier just from having that cushion alone.

Beautiful’s parents live ~10 miles away, so I’m sure meals and an extra helping hand won’t be an issue at all if that time ever does come.

Here’s to making CF stand for “Cure Found,” though!

]]> By: Cysticgal http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-1049 Cysticgal Tue, 21 Sep 2010 04:50:00 +0000 http://www.cffatboy.com/?p=1646#comment-1049 What a wonderful, honest post. The biggest thing I have learned so far, as one control-freak to another, is that when the time comes you can release all those responsibilities and your loved ones DO step up and take care of all of them. It is daunting at first, but the you get so focused on recovery (like you are now on improving weight and FEVs) that the bills and lawn care and the other responsibilities sort of fall away, and the truer gift is that people in your life learn that they CAN do things they thought they could not - and they take joy in doing them for you. I don't think you'll need a transplant any time soon / ever - but if you do - you'll get ready fast because you are such a determined, strong-willed person. It'll be like another task, "I must let Beautfiul cook the dinners. I must get a friend to help around the house." Still lovin your blog! bp What a wonderful, honest post. The biggest thing I have learned so far, as one control-freak to another, is that when the time comes you can release all those responsibilities and your loved ones DO step up and take care of all of them. It is daunting at first, but the you get so focused on recovery (like you are now on improving weight and FEVs) that the bills and lawn care and the other responsibilities sort of fall away, and the truer gift is that people in your life learn that they CAN do things they thought they could not – and they take joy in doing them for you.

I don’t think you’ll need a transplant any time soon / ever – but if you do – you’ll get ready fast because you are such a determined, strong-willed person. It’ll be like another task, “I must let Beautfiul cook the dinners. I must get a friend to help around the house.”

Still lovin your blog!
bp

]]> By: Jesse Petersen http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-791 Jesse Petersen Fri, 30 Jul 2010 01:05:47 +0000 http://www.cffatboy.com/?p=1646#comment-791 I'm almost at a loss for words at your reply, Shannon. That is some good stuff. Our talks about transplant are very emotional. It's a balance between fear, reality, the unknown, hope, death, and an awesome set of new lungs. I don't even want to have to need a sinus surgery now that we're married because of that slim chance of something happening, so thinking of a transplant takes that to a whole other level.<br><br>One other thing is for sure if it comes to that: I/we will definitely be able to stay on top of treatments and meds and get the absolute most out of new lungs because we've shown ourselves and the world that we can do 100% compliance. You'll be looking at a VERY athletic Fatboy. Shoot, all I need to do is get myself back up to 60% and I will start to amaze myself again. I was quite the energy box at 60-70%.<br><br>You are prime on our list of people to discuss decision stuff since you two are pretty much our Northern avatars. Your site was a wealth of info when I started on the CF writing streak. I'm almost at a loss for words at your reply, Shannon. That is some good stuff. Our talks about transplant are very emotional. It's a balance between fear, reality, the unknown, hope, death, and an awesome set of new lungs. I don't even want to have to need a sinus surgery now that we're married because of that slim chance of something happening, so thinking of a transplant takes that to a whole other level.

One other thing is for sure if it comes to that: I/we will definitely be able to stay on top of treatments and meds and get the absolute most out of new lungs because we've shown ourselves and the world that we can do 100% compliance. You'll be looking at a VERY athletic Fatboy. Shoot, all I need to do is get myself back up to 60% and I will start to amaze myself again. I was quite the energy box at 60-70%.

You are prime on our list of people to discuss decision stuff since you two are pretty much our Northern avatars. Your site was a wealth of info when I started on the CF writing streak.

]]> By: Shannon Steffen http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-790 Shannon Steffen Fri, 30 Jul 2010 00:55:22 +0000 http://www.cffatboy.com/?p=1646#comment-790 Oh Jesse, where do I start?<br><br>Before Greg came down with pneumonia in 2002, and nearly died, I was the type of woman that could do nothing for myself. Heck, I would get upset if I even had a hangnail.<br><br>It took his lung function dropping to around 10% and being on a ventilator for 9 months for me to understand the true power I had within. At that time, I was working full-time, going to school full-time and I refused to put him in long term care which resulted in my being his home nurse for 6 months (with all the lovely machines). Before I could bring him home, the hospital made me replace his trach tube. Let me tell you that that is one of the most difficult things every to do to someone you love!<br><br>Those 9 months made me strong when we got the call in 2004 that his new lungs were waiting for him!<br><br>Beautiful has more power that either of you can imagine. It is her love for you and the strength of your relationship that gives that power. I pray that a cure for CF is found way before you need a double lung transplant but I can tell you that, should that day come, Beautiful WILL be able to handle it. You will both be able to handle it together!<br><br>Although Greg is now 6 years post CF bilateral transplant, we still raise awareness for Cystic Fibrosis. He lost his older sister at the age of 16 and has 2 younger cousins with CF - it is our responsibility to help find a cure - in the memory of Diana and for the future of our family and friends.<br><br>It's perfectly normal to be nervous but I can't even describe to you what life is like after an organ transplant. Stating it is a "miracle" just doesn't do it justice.<br><br>Best of health, love and happiness! Oh Jesse, where do I start?

Before Greg came down with pneumonia in 2002, and nearly died, I was the type of woman that could do nothing for myself. Heck, I would get upset if I even had a hangnail.

It took his lung function dropping to around 10% and being on a ventilator for 9 months for me to understand the true power I had within. At that time, I was working full-time, going to school full-time and I refused to put him in long term care which resulted in my being his home nurse for 6 months (with all the lovely machines). Before I could bring him home, the hospital made me replace his trach tube. Let me tell you that that is one of the most difficult things every to do to someone you love!

Those 9 months made me strong when we got the call in 2004 that his new lungs were waiting for him!

Beautiful has more power that either of you can imagine. It is her love for you and the strength of your relationship that gives that power. I pray that a cure for CF is found way before you need a double lung transplant but I can tell you that, should that day come, Beautiful WILL be able to handle it. You will both be able to handle it together!

Although Greg is now 6 years post CF bilateral transplant, we still raise awareness for Cystic Fibrosis. He lost his older sister at the age of 16 and has 2 younger cousins with CF – it is our responsibility to help find a cure – in the memory of Diana and for the future of our family and friends.

It's perfectly normal to be nervous but I can't even describe to you what life is like after an organ transplant. Stating it is a “miracle” just doesn't do it justice.

Best of health, love and happiness!

]]> By: Jesse Petersen http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-788 Jesse Petersen Thu, 29 Jul 2010 14:37:39 +0000 http://www.cffatboy.com/?p=1646#comment-788 Thanks for making me re-read that paragraph. Yeah - it says it exactly how I feel. Thanks for making me re-read that paragraph. Yeah – it says it exactly how I feel.

]]> By: Jesse Petersen http://www.cffatboy.com/2010/07/emotional-evening-and-im-not-getting-new-lungs/comment-page-1/#comment-789 Jesse Petersen Thu, 29 Jul 2010 14:36:36 +0000 http://www.cffatboy.com/?p=1646#comment-789 When you have as many green people on your blogroll as I do, you can't but have thoroughly thought through the entire chain of events. I will definitely be the most conflicted I'll ever be if that time ever does come. When you have as many green people on your blogroll as I do, you can't but have thoroughly thought through the entire chain of events. I will definitely be the most conflicted I'll ever be if that time ever does come.

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