There is something emotional to the core about Cystic Gal getting her new lungs tonight as I type. She is currently under the knife having her wretched, diseased lungs carefully removed from her chest cavity. Beautiful said she felt the same way when Piper got her lungs, but I wasn’t following Piper like I have been CG, because CG is all over Twitter and the blogs with comments and such.
Beth Peters (CG) is my first cystic fibrosis friend to receive her dream of new lungs. Everyone else has become a friend post facto, at the very earliest with me finding out they got “the call” and following them as their transplant day progressed.
Beautiful asked me what I was feeling about her transplant before she went to bed tonight. I couldn’t quite put my finger on it because it’s not like we’re great friends, but we have hundreds of tweets going back and forth and understand each other pretty well. We are both fighters. She’s going this alone in Boston, and I have to respect that a ton.
My eventual answer was I’m feeling emotional because, barring a cure that prevents CFers with my level of pulmonary damage from ever needing a transplant, this will happen to us someday. I’m banking, praying, and working towards health and a cure, but I’m witnessing what could be exactly what we experience some day in the future. It’s scary. It’s exciting. Did I mention that it’s scary and exciting?
I simply can’t fathom going under feeling like crap, waking up 3x worse with all of the tubes, vent, and pain pills – only to see incredible improvements every day as the vent comes out, tubes come out, and the walking with untamed lungs starts. I can picture it after reading about it so many times, but I can’t wrap my mind around it. My heart is even further behind my mind when it comes to dealing with my default setting to take care of Beautiful and need to be tended to for so long.
- I’m the provider (of as much as I can).
- I’m the driver.
- I’m the most-of-the-time chef.
- I’m the quicker decision-maker.
- I’m a control freak to some extent.
I certainly don’t like to lose complete control, but I will for a certain time. As I gain my control, I can see myself becoming a super pain in the butt to nearly everyone around me as I try to do everything I’m used to – and more!
These are all of the feelings that rush in when I see an update that a friend is starting her new life today. It’s a lot to feel with such a small blog update saying that surgery has started, but that’s what happened.
Good morning Fatboy. My name is Matt…Cystic Gals uncle and I just read your site for the first time. Thank you for the kind words about Beth. We continue to get great news throughout the evening and the latest is the surgery is completed, she's off the bypass and will be wheeled into ICU in about an hour.
Best of luck to you on your daily battle with CF. You're a talented writer. Keep up the good work as you inspire others.
U-Matt
Thanks, U-Matt, for the update and kind words yourself. I have a feeling that I'll be quite distracted from my work hitting “Refresh” on Twitter and CG's blog today. I forgot to tell her to give Theresa the ability to accept comments – I dropped the social media ball there, but at least we have a good stream of Tweeting and Facebooking going that wasn't planned out before her last dry run.
I can't wait to see our first tweet from CG herself, drugs and all!
As bad as getting both hands immobilized was, I can't even BEGIN to imagine what it's like to get a lung transplant. Looks like you're thought about it a lot. We're praying for a cure before you need new lungs.
paragraph 4 – my thoughts exactly…..
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.
Thanks for making me re-read that paragraph. Yeah – it says it exactly how I feel.
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!
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.
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
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!