Andrew has chosen UNC Hospital as his Transplant Hospital!
He’s feeling super confident about his decision and that’s going to help him succeed through this transition! So proud of him for taking initiative and staying optimistic & motivated!!
xo,
Amber
One thing that Andrew and I have that most other Transplant Patients don’t have is the luxury of living near two great transplant hospitals within a 30 mile radius. Most of you know that Andrew has had his CF care at UNC Hospital for the past 4-5 years now. As a teen he was with Duke University Hospital but, when he transferred over to adult care, he found it wasn’t the best fit for him and tried UNC where he’s stayed ever since.
Now, we’ve come to this next big step in his treatment plan: The T Word. We have two esteemed hospitals at our disposal and we have the TEDIOUS task of deciding which one is better for him pre-, during, and post-transplant. I mean – how the hell do you decide something like this?!
We love our team at UNC, but want to make sure this huge decision is made precariously & contemplatively. We’ve talked to the Transplant Team at UNC, and today we had our first consult with the team at Duke. The differences are slight, but still very prominent to us. We have been in touch with transplantees from both hospitals & are looking at it from all angles. We’ll be making a decision tonight or tomorrow (I know you’re on the edge of your seat) and be moving forward with whichever hospital we choose.
The main factors we’re taking into consideration: Volume of Transplants vs Personal Care. Is it more important to go with the place that has the BIGGEST numbers in the biz, or the place that makes you feel confident & motivated?? What a conundrum!
We’re just so freaking thankful that NC State doesn’t have a Transplant Hospital… Unless you’re a horse… or a cow…
Stay tuned for TRANSPLANT HOSPITAL DECISION 2014: THERE CAN BE ONLY ONE!
xo,
Amber
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
Today is Rare Disease Day, if you haven’t already noticed via Social Media everywhere. Since CF is a rare disease, here’s some things you should know, straight off the Cystic Fibrosis Foundation’s website… with a few added facts from yours truly:
People with CF can have a variety of symptoms, including:
Statistics
For more info – check out my answers to the CFF’s frequently asked questions page here!
xo,
Amber
Hey, Peeps!
First, I’d like to offer my apologies for not keeping this damn blog up to date! Life is so busy, and I’m easily confused. However, Andrew came across a post on Cracked not too long ago written by Jay Gironimi about his life with Cystic Fibrosis and it made me realize that it really is important for us to keep up with this blog for awareness, compliance, and general sanity! (See Jay’s article here.)
So the short and sweet with what’s been going on with us: I got a new job with a footwear company called Feelgoodz. We are a footwear company that partners with countries around the world to produce all natural, fairly traded products while promoting sustainability and human empowerment. (A mouthful right?) Well, get some – cuz we’re awesome!
Andrew’s been hitting the real estate trails hard working on listing appointments, office meetings, and other fun stuff! Spring is right around the corner, and he’s super excited about all the prospective business coming in! (I am too, let’s be real) Check out his sweet website – it’s looking so nice!
In case you live under a rock, we got hit with a crap ton of this cold, white powdery nonsense the northerners call snow! Then ice. Literally, we didn’t leave the house for almost 3 whole days! That’s a lot of indoor time. After the huge meltdown though, we hit the town for Change The Triangle’s 2nd Annual Valentine’s Day Soiree. We got fancy and had a fun night out to squash those cabin fever blues! It was great fun!
Valentine’s Day Soiree 2014
Next weekend we’re heading to my hometown on the Outer Banks to celebrate my birthday with my mom and dad! There will be Red Velvet Cupcakes. Enough said.
xo,
Amber
What’s up, folks!?
This is a quick update today because I wanted to share with you all a couple of things Andrew and I are doing behind the scenes. First, I have created an online CrowdSourcing campaign for our design and printing company, Pens & Needles. We are searching for investors to help us achieve the dream of owning a small business. If you would be interested in contributing, or know someone who might be, please share our story with others using the link below!
Also – as you may have read – Andrew got his real estate license and he’s getting a lot of his marketing up and running! So I wanted to share his website with you all and give you the chance to connect with him on Facebook and Twitter and LinkedIn! Please keep him in mind if you are selling, buying, or just generally want to talk about real estate! He’s really good – I’m not just biased. (Keyword: just)
Ok – CF news: Andrew’s doing great! We volunteered at the CFF Cycle For Life a couple of weekends ago and we went to Busch Gardens’ Howl-O-Scream this weekend! I’ll update you all on that a little later this week. I know you’re on the edge of your seats!
Until next time,
xo,
Amber
Howdy, Folks!
Where have we been, you ask? Well, I’ll tell you:
1. We’ve been moving! The homeowner’s association of the townhouse we WERE renting decide to kick all the renters OUT! Can you say, “drunk with power”? No worries though – we really like the new place and are settling in quite nicely!
2. Andrew’s been working SO hard at getting his Real Estate License. And guess what?! HE DID IT!!! That’s right, ladies and gentlemen, Andrew is officially a Licensed Provisional Real Estate Broker! He had his first day with Go Realty yesterday and is ready to start listing and showing some properTIEs!
The only thing you missed was our dramatic appointment day. We went in the morning for Andrew’s Mic-Key Button change. We got checked in, gowned up, all settled in to watch Live with Michael and Kelly, and then they wheeled him back to the procedure room. Alas, they did not have the right button size (come on, man!) and so he got dressed and we left for Clinic. Apparently, I forgot to say anything to anyone about my being on Say Yes To The Dress, which REALLY doesn’t sound like me, but the Dietitian saw it anyway! I felt pretty famous since everyone was coming in to say hi and talk about it! I LOVE talking about my experience because it was so surreal and if the situation was reversed I would want to know EVERYTHING! That was pretty cool! And, medically, even after the Tobi PodPOCALYPSE Andrew’s numbers were looking good and we went home with a gold star!
Until next time… whenever that may be,
xo
Amber
PS – Andrew and I have been told on three separate occasions that we are entertaining and should have our own Reality Show, so whenever the producers of TLC would like to go ahead and start that up, we’re ready! Ya know, spin off of my episode of Say Yes To The Dress – raise awareness of Cystic Fibrosis – and generally entertain the public with our antics! Just call me… maybe?
You guys! I seriously have to tell you about this past Saturday’s adventure and the lengths my RIDICULOUSLY amazing husband went to to make me happy!
The first thing you should know is that Andrew went on a quick 10 stint of oral antibiotics for a nagging fever that he couldn’t get rid of on his own. He started on Friday, so he’ll be on them for a few more days. Nothing super relevant to the story, just feel like I should relate this blog post back to CF somehow!
My friend, we’ll call her Sally, had her birthday back in April. Being the awesome friends we are we got her a trip to a vineyard for a tour and tasting! The problem was that we all wanted to taste the wine! But who would drive us home? I somehow managed to convince Andrew that he could drive us all, in his SUV, to the vineyard and back. The vineyard was about an hour away, so he’d also have to find something to do while he was there…
Most of the girls met up at our place and piled in the car, and we head out to pick up the “Birthday Girl”. Pretty much immediately after we turned out of our neighborhood, Andrew got pulled over. He was going 48 in a 35. In his defense, the 35 mph road in question is a FOUR LANE road, people. FOUR LANES! Of course, Andrew’s inhaler (with the spacer attachment) is sitting next to me in the chair. The cop motions to it saying, “Is that an inhaler?” Andrew says yea because, guess what?, IT IS! So then the cop says something about it looks like something else or whatever. Paraphernalia reference – we get it! Move along! I get all pissy that the cop would even point it out (“And if he makes us get out to search the car I’m gonna lose it!”) but it actually might have helped Andrew case because he got off with a verbal warning. Apparently it was a “complaint area” and there were like 85 officers around. My complaint is that they have made the speed limit on a 4-lane road 35 mph, but I don’t think that would stick.
We had to stop for gas and Andrew wanted to throw a little more air in his tires. So we’re all chilling in the car, chatting away when hunger strikes! So my friend, we’ll call her Jen, goes to open her door and all I hear from the front is a loud THUD and a slight groan… That’s right – apparently Andrew was checking the tire behind Jen’s door and he head was right in front if it when she swung it open. He may or may not still have a bruise from that one. Oops – strike two, right?!
We finally make it to Sally’s house and head out – then turn around to get the info for the winery – then head out again! When we get to the vineyard, we all unload and grab our stuff and Andrew says he’s gonna go find something to do but to text him when we’re done. So we go start our tasting and PS – they had WINE SLUSHIES! I realize this is not a new thing, but it is in all caps because that’s the only way to relay the deliciousness to you! OMG – AMAZING and I would drink one right now at work if I had one. I don’t even care! Ok, I’m done. We do our tasting and our tour and we all go to get another drink and peruse the shop. While doing so, I text Andrew to let him know that we’re done – AS INSTRUCTED MIND YOU! We’re outside just hanging out on the patio and Andrew pulls up. We’re all “HEY ANDREEEEWWWW!!!” He’s all “Hey guys.” So we ask him what he got into and he’s like, “Oh, I was in a movie.” That’s right – not only did he get pulled over and smacked in the head, but he also left a movie 2/3rds of the way through, nachos in tow!
Even after all of that he STILL hung out with us until we finished our wine AND took our silly asses downtown for MORE drinks!! What a guy, right?!
Until next time!
xo,
Amber
Well, hey there! It’s been a while, how have you been? I’m sorry for the lull in blogging but Great Strides took up a BUNCH of our time! Occupying CF is hard, y’all!
Anyway – this is just a quick update about our fundraiser. And also a little thank you shout out to everyone that donated, walked/ran, or held fundraising parties for our efforts. We really appreciate the overwhelming support from our family and friends. As a team, we raised $1,652.00 for the CF Foundation! I’m hoping that next year we break $2,000 – because that would be the bee’s knees. On top of that, we had awesome team shirts – and no I’m not bias because I designed them.. PSHT! We also had a pretty rad tent situation. When I got the email from the Carolina’s Chapter of CFF about setting up tents and decorating I immediately thought: Challenge Accepted! Our lovely (and ginormous) tent was graciously offered by two of our close friends and I got to work with all things shiny, gaudy, and streamer-y.
Here, please enjoy these pretty pictures…
Our lovely tent and banner!
Men at Work.
The Starting Line…
Fair Verona, Queen of Occupying CF and Tired Pup
It was such a beautiful day – the rain held out until we had everything packed up and we had a nice long walk around our beautiful city!
THANK YOU again to ALL OF YOU!!!!! See ya next year, Great Strides;)
xo,
Amber
Happy May, Friends!! We are officially 5 months into 2013 – you’re welcome for that perspective. My, how time flies! With the start of May happening just yesterday, we have officially kicked off CF Awareness Month! (see: #CFAwarenessMonth) I know a bit ago we did an FAQ on CF in all of it’s wonder, but I want to share with you guys a few ways to SPREAD awareness, because knowing is half the battle.
The easiest way for all of you social medianites out there is to use the hashtag I mentioned above, #CFAwarenessMonth, in all of your posts! It doesn’t even have to be about CF. It should… but it doesn’t HAVE to! Just get people talking and it will work itself out, probably.
Another big part of CF Awareness is taking action through advocacy! There are lots of ways to become an Advocate for CF. Currently there are actions needed to help prevent disability limitations (yes, CFers are considered “disabled” and they need the Social Security Administration to quit making it so difficult to get some benefits!) You can work to protect CF care programs state by state and you can send good ole Congress a shoutout asking them to protect our progress toward curing CF! CLICK HERE for access to all of these great methods of advocacy!
Are you a Facebook fiend? If so – you can follow the CF Foundation and share, like, comment, stalk, etc all of their posts and then your friends will see and be like “YO! What’s CF?” They are also on Twitter, Google+, and YouTube! HOLLA!
If you’re all like, man – I would really like to update stuff but I have no idea what to say to make my loyal followers aware! Then here’s a couple of ideas:
-30,000 Children and Adults have CF in the US.
-More than 10 million Americans are symptomless carriers of the defective CF gene. (Get tested!)
-About 1,000 new cases of CF are diagnosed each year!
And, finally, this lovely month is riddled with CF Great Strides walks! Which is the number 1 fundraising event for CF and the CF Foundation! It may be easier for you to drop a couple of dollars toward an event, write it off on your taxes, and pat yourself on the back! If so – why not do so with our team!! (Shameless self promotion is not so shameless when it’s CF… Truth Bomb!) If you’re interested, go to our home page and click the yellow “Click To Donate” button at the top! (We’re giving away prizes to random participants… it could be you!)
Alright, do you feel aware? Do you feel informed?! Then my job here is done…
xo,
Amber
The more you know!
a perspective of another life
Fundraiser with more questions than answers.
Our journey to parenthood through loss, life and adoption
A spirited documentation of my personal style.
Est. 2010
To CF With Love... 