The Great Debate

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

The “T” Word

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

Dem Meds Tho

Can I just say that you have not experienced refilling prescriptions until you have experienced refilling CF prescriptions! It should be a flippin’ Olympic sport. “Extreme Downhill Refills” “Prescription Slalom” “Synchronized Pharmacing” Ok, I realize this analogy might be more ironic if we weren’t still coming down off the Sochi high, but whatevs.

This past weekend, Andrew and I took a little trip to the beach to see my parents/get my birthday swag. About an hour and a half into a 3.5 hour trip we realized we forgot his anti-anxiety meds. (And before Andrew can argue the point let me correct myself. HE realized that I forgot his meds…) Unfortunately, that was a big problem considering this particular medicine can make you terribly sick if you go off of it for more than 24 hours. Even more unfortunately, it was pouring a damn flood so circling back another 3 hours was the last thing we wanted to do. It was time for the Emergency Refill call.

Backstory: we recently, like within the past week, moved all of his prescriptions over to the Target Pharmacy. For lots of reasons I’d rather not get into but let’s just say, we’re attention starved. This also meant, we weren’t sure where this prescription was even located!

So- we stopped at the next Target we found. Nope! Not at Target. So we called CVS. Yep, it’s at CVS- but you can’t have it. SAY WHAT??!

Apparently, this crazy medicine that makes you not crazy (and nice to your wife) is also the white buffalo of prescriptions. Your refills have to be exactly in line, signed off on each month, and you have to bypass Hitler to get to the second level of Mordor. Or something like that. Some people would have given up, turned back, drove the 1.5 hours in the opposite direction for 4 pills – but not us! We’re scrappy!

We called Raleigh CVS, yes the ones we Judas’ed by moving to Target, and had them send it to the one on the beach. Then we called THAT CVS and made sure hey had it. Then asked if my parents could pick it up in case we didn’t make it before they closed. Yes, yes, YESSSSS!!!

This may sound like a small victory to you, but that’s because you haven’t experienced the training and dedication it takes to master the prescription world. And we landed that refill with precision and grace! 10s all around!!!!

Xo,
Amber

With Great CF Comes Great Responsibility

Hello, again!  Happy Pollen’s-Everywhere-Don’t-Wear-White/Spring to you all!

We’ve gotten a lot of feedback from other members of the CF community applauding Andrew for all of the hard work he puts into staying on top of his treatments, physical therapy, etc.  Because of that I was inspired to take a moment and talk about compliance with medicine and treatments for CF.  And I guess really any disease, but I can only preach to one at a time… Please feel free to interpret according to your own needs!

I have heard many stories about Andrew’s wayward teenage days.  We were acquaintances after high school, but I don’t remember much about him.  Except for that decrepit straw cowboy hat…  Anyway, he was not such a great patient, once upon a time.  It’s hard to maintain all of the medicines and treatments when all you want to do is go outside and play with your friends.  He has 3 rounds of treatments each day, plus 3 sessions on his Physical Therapy Vest, plus making time to go work out at the gym which is actually a really important part of his routine.  He does, most of, this on a regular basis!  But that wasn’t always the case.

Admittedly, he slacked off a lot throughout high school and early college.  No one wants to say “No, bro, I can’t go longboarding in this awesome weather because I have to do like eighty-million treatments!”  But the truth is, not adhering to Doctor’s Orders can be more damaging than taking a wicked spill because you’re too awesome to wear knee pads in front of your friends.  It has taken him quite some time to get back on track from his adolescence, and he will tell you it was NOT worth it!  As your resident Queen of Nagging and Scheduling, it’s really not hard to get into a good routine!  You can absolutely get three rounds of treatments in, all the vest action your little heart desires, and some gym time while leaving personal time to, I don’t know, clean the house before your wife gets home? Or play Xbox… whatevs!

Andrew has finally found an awesome balance between compliance and still having a life! He gets all of his treatments done, all of his vest time in, and most of his gymming done WITH spare time to go outside and play with his friends.  Yes, sitting on a patio drinking pretentious craft beers counts as going outside and playing with your friends… when you’re 27!

 

xo,

Amber

 

PS – Feel like donating to a worthy cause?  Stroll on over to our Great Strides page and make a contribution!  KICK CF’S ASS!