The Week We’ve Had…

Last Friday, June 20th, at around 6:00AM while I was fast asleep in our king-sized bed at home, & Andrew was pretty much asleep in his almost-twin bed in ICU, the nurses snuck in and turned off his tube feeds. The first sign that something was happening.  I woke up around 8:00AM to nine text messages and a missed call from Andrew.  They had found a possible match for lungs! The only thing we knew was that there was a young end-stage diabetes patient who had graciously listed themselves on a donor list.  The surgery for everyone to take a look at the various organs to be donated was to happen at 9:30AM and we were informed that we should know something around 11… As I took my time getting ready because we “had plenty of time”, Andrew was still texting and keeping me in the loop of everything that was going on. Around 10:00AM I got the text from Andrew: “It’s a go!”  The rest of the morning was a whirlwind.  We heard that the lungs were in great shape and Andrew was an excellent candidate for them.  They got him ready and transported down to the Operating Room area in record timing. Our emotions were definitely on a roller coaster as we talked to anesthesiologists, pulmonologists, surgeons, nurses, etc etc etc.  Then at 1:35PM they rolled him back to the operating room & sent me on my way.  They said the operation could take 6-8 hours so to be back in the waiting room around 7:30PM. I did the only thing I could do to keep my mind off of everything for that long: I shopped! I’m very thankful that the hospital is so close to The Streets at Southpoint (my favorite mall)!  I got some lunch with Andrew’s parents who had come up during the frenzy.  And I didn’t have to shop alone; Sara (who will forever be my Angel) left work early to meet me and keep me company.  She went back to the hospital with me at 7 to wait until the surgeons came to give me an update post-surgery.  My husband, my best friend, my soulmate was finally getting his new lungs!

As we hung out in the waiting room from 7-9:30PM Maggie came up for support, along with Michelle and Brian, and Andrew’s family.  Finally, around 9:30PM, the surgeon came out to give me the news.  The operation had been a success and Andrew was in the ICU! We stuck around for a few more hours until around 11:30PM when the nurses said that he was still asleep and they were still trying to get him comfortable.  After all the excitement, I told them that I would go ahead and go home but that I would be back bright and early in the morning. We left the hospital around 12AM and on my way home, at 12:30AM, I got a call from the hospital…

Since Cystic Fibrosis patients have very sticky lymph nodes and scar tissue, when removing his old right lung one of those sticky nodes was stuck to an artery. There was tiny amount of bleeding which they corrected during the initial surgery.  Unfortunately, it decided to open up a couple of hours afterwards causing his blood pressure to plummet and causing them to give him several units of blood.  At this point the surgeon informed me that they were taking him back into the OR to find the bleed and repair it as quickly as possible.  He told me to continue home and that they would call me in a few hours to give me an update.  Needless to say, I pretty much only slept for about 10 minute increments until they called to give me the update around 4:30AM.  They had found the bleed and fixed it, but he had lost so much blood they were going to be monitoring him very closely while pumping him full of lots of fluids and balancing his medications.

Sara came and picked me up Saturday morning and we went to the hospital together.  His surgeon found me in the hall and gave me the rundown. (I am so glad Sara was there, because I think the only thing I could say was “just do what you have to do”, so she asked all the questions that I would be asking when the shock had worn off a bit!) His blood pressure was still a concern. His anxiety was still a concern. The fluid was weighing down his right lung which was still a concern.  But he assured me that they were watching him closely and would keep me very well informed.  Sara and I went to the waiting room and right as we were about to play “Mod Skip Bo”, one of Andrew’s Transplant Pulmonologists, who had been sticking very close through everything, popped in.  He told me that when Andrew first came out of the initial surgery, things were near perfection.  He was already almost breathing completely on his own.  The new lungs were pink, and fresh, and glowing.  He said that if it hadn’t been for that bleed, Andrew would be up and walking that day.  Unfortunately, complications happen, but everyone was working hard to make sure he pulled through.  He sent me home again with the same prescription: Go shopping. Get a mani-pedi. See a movie & come back tomorrow.  There will never be a way for me to EVER explain or show my gratitude for my friends through this.  Even though my mind kept circling back to my poor Buster at the hospital, my friends made sure I was WELL taken care of.  We went over and saw Maggie’s new house, went to lunch as a big group, did some more shopping, got some dinner, and had some much needed down time at my place until I was so sleepy I could hardly keep my eyes open.  I called that night for an update and the nurse said he was still doing ok and they were still monitoring him closely.  So off to bed I went.

Sunday morning I made the drive back up to the hospital after calling again for an update.  I finally got to see him with so many tubes coming out of everywhere I think that I lost count.  But the good news: Andrew was progressing in the right direction.  Unfortunately, there still wasn’t much to be done on my end.  They weren’t planning to extubate him, or take him off of his ventilator, and they weren’t planning to wake him up.  So off I went again, back to the comfort of my friends and the USA World Cup match against Portugal, calling for updates as my own sanity insisted.  One of our friends is a nurse at the hospital and she sent me the best text I had gotten all weekend.  She had popped in to check on him and everything was going great.  She said his numbers were looking awesome, his bleeding/drainage had slowed, and everyone was saying good things about his recovery.  Still no plans to wake him up or extubate, but that these were all good signs!  I decided that would be my update for the night, and went to sleep a little more soundly.

Monday, Tuesday, and Wednesday were all pretty much the same.  I went in the morning, sat in his room while he slept and they watched his numbers, his lung and kidney functions, his urine output, his bleeding/drainage, etc etc etc. I talked to all the doctors and nurses and surgeons making sure to stay on top of any and all updates/plans.  His CF doctor, the BEST doctor around, made sure to come in regularly.  He even showed me all of his updated chest xrays.  The most amazing thing to me was to see his new lungs in an xray.  After years of seeing his old lungs filled with gunk and spots and looking like, as I described them, an “ant farm” – his new lungs were totally see through! It was like a totally different person!  The tricky part now was trying to get the scab off of that artery I mentioned earlier, so that the air could circulate correctly and then they could wake him up and get that breathing tube out.  By Wednesday, time had pretty much slowed down to an unrecognizable entity.  With all the air being pushed into him through the ventilator and not circulating well because of the scab, the air was leaking into his body underneath his skin and he looked like a blow up doll.  Seeing him with tubes everywhere didn’t bother me.  The breathing tube coming out of his mouth didn’t bother me.  The blood and drainage didn’t bother me.  But seeing my man swollen and ballooned up was the hardest part.  Or so I thought…

Throughout all of this, one of the main things that the nurses updated me about was his “agitation”.  Andrew has always been very sensitive about his throat and has suffered with anxiety for a long time.  So, even under HEAVY sedation, when he would wake up slightly he was having “tantrums”.  On Wednesday, I was in the room to witness one of these.  It broke my heart & was the hardest thing I had experienced during all of it.  I will spare you the details, but it was right after they had taken him back for a CT Scan to check on the scabbing & right after they had decided to take him back into the OR yet again.  Since the scab wasn’t coming off on it’s own, they decided it was time to go in and wash it out themselves.  That third surgery was quick and they started to suck all of the residual air out and would continue to throughout the night.  Everyone seemed very encouraged that this was the best step and that it should do a world of difference for him.

When I came in Thursday morning, he was much less swollen and blown up. He was starting to wake up and they were so happy with the results from the third surgery, they were ready to extubate and get that damned tube out of his throat.  His numbers were exemplary and they knew it was time to move forward.  I stepped out of the room while they got the tube out and when I came back in he was a little more awake and now just on a nasal cannula.  He was still VERY loopy and in quite a bit of pain. I told him that I was going to eat some lunch but that I would be back and as I left he blew me a kiss! When I came back from lunch he was definitely feeling a little self-conscious and a lot overwhelmed.  He told me he wanted to be alone and focus on relaxing.  (In so many words/hand motions.) I told him that that was totally fine and if he needed me they could call me right back! He told me he loved me twice and blew me another kiss so that I knew he didn’t mean it badly.  What a sweet kid!!!!

Today marks a full week since his double-lung transplant. He’d been unconscious & on a ventilator for 6 whole days.  He’d undergone three surgeries.  And what was the first thing he said to me when I walked in? “I missed you so much!” (I melted… ) The second thing he said was that he was “still catching up”.  By the time I left this evening, he was sitting in a chair, watching ESPN, without oxygen (just the nasal cannula on to help him adjust to not needing it anymore) and telling me he loved me and that he wasn’t hurting! My husband is a rockstar! He’s a fighter and a champion, which is probably why I have had the Rocky theme song stuck in my head all evening. We’ve got a long road of recovery ahead of us, but we can do it! Tomorrow – they plan to get him walking & working on his speech.  I will update more frequently as he continues to get strong and recover so that everyone can stay in the loop during it all.  I want to say thank you to EVERYONE who’s been asking for updates and sending words of encouragement and support.  And thank you to everyone who’s been saying prayers, sending good vibes/thoughts, and thinking of us this week.  Andrew is so deserving of such amazing support and such popularity.  Not just from our friends and family, but even people he’s touched at the hospital.  Respiratory Therapists, Nurses, Doctors, fans from the CF Clinic have been coming by every day for the past week just to check on him.  He is an inspiration and I am the proudest wife in the world!

xoxo,

Amber

Survey Says…

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

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

Hanger Management

No no no – that’s not a type-o.  Urban Dictionary describes Hangry as “When you are so hungry that your lack of food causes you to become angry, frustrated or both”.  I’m currently thinking about submitting Andrew’s picture for them to place subtly next to the definition.

Since our insane visit to the ER when Andrew’s button fell out, we’ve been over-cautious about making sure it’s changed regularly.  At first we thought regularly meant once a year, then they said every 6 months… now it’s every THREE months!  We are totally fine with  going that often if it means no more emergency room visits.  The only problem is that the doctors require him to have an empty stomach at least 8 hours before the procedure.  This makes Andrew quite hangry!

We went last week and made sure to schedule it as early as possible so that he wouldn’t have to go through the day being so hungry.  I went with him since they require a driver (huh?).  I know he gets moody when he’s hungry, but this was a whole new level!  We’ve been over the digestive issues CFers have so I’m not going to dive in, but if you don’t know – dude’s gotta eat!

Here’s a list of things I cannot do properly while the Hangry Monster is around:
1. Drive

2. Talk

3. Breathe

4. Blink

5. Text

And here’s a list of things I do very well:

1. Watch TV… silently.

2. Agree with everything he says, while nodding.

3. Make sure I get him tissues, cups, masks, & whatever else he wants… silently.

4. Answer questions that he does not know – when asked.

5. Handle anything financial/insurance-related.

While no one is perfect and I’ve been known to get hangry a time or two – or twenty – my solution to this Hangry Button situation? Give me some buttons and I’ll do it myself! I mean really! There’s some sort of wire involved, but we have coat hangers*!  When it fell out, I stuck a tube in there and all was well – I could TOTALLY do this!  But, alas, that’s one of the things I’m not allowed to do. Along with removing his PICC line and changing IV’s when he has them.  Yes, I have asked.  Yes, on more than one occasion.

So, I guess for now I will drive him to these appointments, mind my manners, and try not to beat the crap out of him while he’s in HANGRY HULK SMASH mode – even though we’re in a hospital… what better place?  Then feed him and watch him return to normal husband color, stature, and mood.

Since tomorrow is FoodTastic Friday, Andrew will follow-up with information on his feeding tube and how it helps him gain weight!

xo,

Amber

 

*Disclaimer – I would never actually stick a coat hanger in my husband’s stomach and the tube we put in there when it fell out was sterile. Thanks for your concern.

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! 

CF ROCKSTAR

I know we like to post things on here that are pretty funny.  Laughter is the best medicine right?  This post may not be the most hilarious piece of writing you’ve ever read, but we also want to share positive news with everyone. No Negative Nelly’s on this site, friends.

Andrew has appointments every 3 months to make sure he’s doing ok.  And probably to double check if he still has CF… Ok, probably not.  Well, he had an appointment recently and it went really well!!

When he goes in, he has to do breathing tests to measure his lung capacity and “stuff”.  I don’t go in there during that time.  There’s not really a reason… That I know of… Maybe I’m just not allowed in there?  I don’t know, moving on.

ANYWAY! He blew really well! (Pun intended) His numbers are UP and that is GREAT news!!  His Doc even said they were the highest they’ve been in about 18 months.  We always get really excited after visits like that because it means a) he’s being compliant. b) he’s able to breathe a little bit better. and c) we’re that much farther away from a transplant! So YAY, Andrew! You’re a CF ROCKSTAR!

In addition, his weight is up too! Which brings me to a new segment I want to start on here: Foodtastic Fridays!  I’m going to FORCE (most likely at butterfly-knife-point) Andrew to post at least every Friday with food he likes and ways to get a lot of calories, which CFers need! So, be looking for food tips and tricks and recipes, oh my!

I HOPE EVERYONE HAD A GREAT ST PATRICK’S DAY!

xo,

Amber