What’s Up, Everybody??
Remember in the last blog when I said I was going to start updating more, and then I didn’t? Yea – that was funny, huh? But in all seriousness, this last month has been a whirlwind & you should def cut me some slack!
May is CF Awareness Month and there’s no better time to make our family, friends, & followers aware of what’s going on in our CF world. Let’s take it from the top:
About a month ago Andrew went in for an unscheduled Clinic appointment because he was feeling a bit under the weather. He had a tune-up back in the fall, which is his usual tune-up time. However, his PFTs had dropped a bit and they decided he should do another round of IV Antibiotics from home. Over the next couple of weeks, he just couldn’t kick what was bringing him down so we went in to check on his progress. While he hadn’t declined any, he also had not progressed. So, into the hospital he went. First time actually IN the hospital in about 2.5 years! We actually felt like “old timers” with all the new changes they had made to in-patient care! No more chest PT, but they now offered legit Room Service! And by legit I mean, you order from a large book of menus and it’ll get there in about an hour.
Andrew hung out in the hospital for a little over two weeks while they tried to discover the right cocktail of antibiotics for whatever yuckies he was carrying around with him. And they decided he should be on oxygen to help him with his breathing. They also decided to switch his anti-anxiety meds and some of his breathing treatments. He’s like a whole new guy with these different prescriptions! I barely know him anymore! JK – I do.
Let’s do a little remix and fast forward to this past Monday: he came home! WOO! I was getting pretty lonely around here, and the doggies were starting to go a bit nutso without their daddy! He is home on IVs and Oxygen, but he has so much more room for activities! And there are FAR more places to sit! All good things! K – time to rewind… are you keeping up?
Rewind to week 1.5 in the hospital, when the dreaded “T” word came up. As some of you may know, a double-lung transplant is fairly common among CF Patients. When they’ve gone as long as they can on the lungs they were born with, it’s time to switch them out for some fresher ones. Since this is the first time Andrew’s numbers have been this low, and the first time he’s been on continuous oxygen, his Docs decided it was time to start thinking about the “T” word.
I won’t bore you with the details of the mania that ensued afterwards, but let’s just say it was a rough few days for us. One thing Andrew and I always thought, but rarely said, was that a lung transplant was the LAST thing we’d ever want. A last resort. A means to an end. A step in the opposite direction. We both, secretly, were struggling with this thought. Our instructions were to research, gather information, learn, and decide who, where, when, and how. But we couldn’t seem to get past the black cloud hovering above our heads. “Transplant” had always been a 4-letter word for us.
So as the week progressed we did our due diligence (<points for listening to Andrew talk about Real Estate) and talked to Doctors, Nurses, Social Workers, etc. to gather info. We got some reading materials, a TON of business cards, and a pretty good handle on the process. But then we realized that we didn’t have to rely SOLELY on medical info – there are so many others out there who have been through this, had loved ones go through this, or work with people who have gone through this. We reached out to some of our connections in the CF Community, talked to our close friends who have experience with Lung Transplants (one of which, we’ll call her Sally, is even on the board of the Lung Transplant Foundation and her mom is 14 years post transplant!) and realized… we’ve been thinking about the “T” word ALL wrong!
While we still have a lot to learn and a lot of work ahead of us – we realized that getting a new set of lungs doesn’t have to be daunting or all “Gloom and Doom”. We learned that CFers, especially, have a new life after their transplants. No more coughing fits, no more breathing treatments, no more shortness of breath. He can go to the gym and not have to worry about coughing, or worry about people asking him if he has Swine Flu. Will it be all roses and buttercups? No! And we don’t expect it to be. But what it could be is a better quality of life for Andrew!
So by the end of last week, we decided to move forward with all of the pre-transplant testing, screening, and evaluating. And by “we” I mean Andrew. He’s totally taken the lead on this, for which I couldn’t be more proud! He knows himself, he knows his capabilities, and he’s taking this whole process in stride. Just turning our focus from dread & fear to positivity & optimism has completely rocked our worlds. This is good. Life is good. And we are good.
Stay tuned for updates on Andrew as this all happens a step at a time! And remember, it’s CF Awareness Month so get aware! We’ll be walking the Raleigh Great Strides event this month, so if you feel like you need to show some support to the CF Community, you can donate to our team here!
May is CF Awareness Month
Life isn’t all about making tough choices, it’s about learning to listen to your body and follow your heart! And also learning to listen to your Doctors, because they totally know what they’re talking about! Especially ours – he’s amazing!
XO,
Amber
To CF With Love... 