A Bronch by any other name…

Today marks 2 months since Andrew’s transplant. (Happy 2 Month Lungiversary!) By total coincidence, he had an exploratory bronchoscopy today at Clinic due to some slight wheezing he was experiencing last week. During a bronchoscopy, the doctors go into the lungs with a scope and sort of snoop around to see how things are looking. Often they will extract a small piece of lung tissue to biopsy for an even more detailed analysis.

I guess by now we should be accustomed to the rockiness that is this recovery process, but I think we still have hope every time a procedure rolls around. Which, I guess, is a good thing to have as opposed to living life waiting for the next complication, right? Remind me of that if you ever see me resorting to the latter…

Well, today they found that the deadening scar tissue where the new lungs are connected to his bronchial & pulmonary arteries is not coming out on it’s own and creating a build up of mucus and miscellaneous secretions. The end result is that his airways are narrowing. So, we’ve got another OR visit planned for Friday. This time they’ll do a rigid bronch, like they did when he was still in the hospital, and clean out these secretions, mucus, and dead scar tissue. He’ll have to be fully under anesthesia & he’ll have to be entubated since that’s the easiest way for the surgeons to work with the scope. Luckily for my panic threshold, he’s been through this before and we know what to expect, as do the docs.

In the meantime, they are culturing the bits of secretions that they got today to look for any signs of bacteria or fungus. Since his pulmonary and bronchial arteries are still Cystic Fibrosis-ified, it’s possible. If they find any it will mean getting a couple of weeks of IVs and some inhaled anti-fungal treatments.

I hate the phrase “out of the woods” because that implies that “the woods” is this scary dangerous place where bad things happen. I prefer to think of “the woods” as safe and confined and protected. It’s a much better analogy, in my mind, than feeling exposed and out in the open where anything can happen. I feel like we’ve been “out in the open” for months now and I’m really looking forward to being safe and sheltered, in a sense. His doctors tend to think that this is all just part of the initial recovery phase and that it should all start evening out over the next month or so.

I am hanging on to hope that that is the case and that maybe soon, in the near future, we can have a smooth procedure. Until then, please keep Andrew in your thoughts/prayers/meditations/etc as we go over this next little tiny bump.

Xoxo,
Amber

Weekend at Andrew’s

I would sum up Andrew’s first weekend back at home as spectacular with a dash of surreal and a side of comforting. And not just because I got to wake up next to my best friend again, but because the transition has been fairly smooth. Sure we’re still trying to iron out our routine and get used to doing some new things, along with getting used to not having to do some old things. But, all-in-all, I’d call it a success.

Saturday we took a quick trip to Dick’s Sporting Goods to pick up Andrew some new kicks for his rehab then got some Jersey Mike’s on the way home- Andrew’s choice. He’s gotta get used to having it Mike’s Way with no veggies, but still yummy! Then we watched some TV and had dinner and cupcakes with The (newlywed) Coburns! Sunday we enjoyed listening to the rain while watching some movies. Nice and relaxing.

Some of the new things we are adjusting to are checking Andrew’s blood sugar regularly and administering insulin when needed. Some of Andrew’s new meds have lots of sugar in them and can affect his glucose levels. We are also adjusting to early morning routines and making hearty breakfasts. Sometimes that means eggs, bacon, sausage, and French Toast made by Chef Jacoby. Sometimes that means TWO bowls of Cinnamon Toast Crunch instead of one. We also have to do vitals twice a day including blood pressure, temperature, weight, O2 sats, & pulse rate, which have all been good.

With all the new things we are getting used to, I’d have to say that my new favorite thing is going on our morning walk. When the neighborhood is quiet & peaceful, and the air is fresh & clean. We just stroll along the path I marked out (a 1/2 mile total) and chat about different things. It is hands down the best part of my day! Spending a productive, yet relaxing, bit of the morning with my Man.

Today was Andrew’s first day of rehab. He started with a Physical Therapy assessment which went great! (They were actually really proud of the aforementioned morning walks.) Andrew was such a baller in his new shoes & keeping his oxygen levels crazy high while he did the workouts. They noted that the main things he’ll need to work on are balance & weight training. They even think he’ll be able to be off of his walker before too long! And he’s schedule for 3 sessions/week for 4 weeks! Pretty cool! After Physical Therapy was Speech Therapy and he did great in there, too. He’s already so much farther along than he was a few weeks ago! He’ll be doing that twice a week for 5 weeks. They even sent us home with a list of games to play as “homework”. One of which is Phase 10!!! Can I get a Hell Yea?!

Wednesday he has his first transplant clinic appointment since he was discharged and we’ll get to see what kind of healing progress he’s making at home. Thank you all again for your words of encouragement and motivation! They mean so much to us:)

Xoxo,
Amber

Big News…

HE’S HOME!!!!

That’s right- after a couple of weeks of no updates and waiting for Medicaid, we found some other assistance programs and got our fundraising website started and Andrew got to come home. We’re going to miss all the friends we made at the hospital- especially the team in the CTSU. But we promised to visit as they all cheered and yelled “Byyyye” when we left. And now it’s time for the fun to begin…

We came home with two bags of medicines and supplies including all the things to take his vital signs, check his blood sugar, and change some dressings. He has seriously stepped up his pill game from the pre-transplant meds but his inhaled treatments have been dramatically reduced. He starts his pulmonary rehab and speech therapy next Monday and will have his one week post-discharge clinic check up next week, also!

Tomorrow we start his routine of a fresh morning walk after a hearty breakfast and he gets to take it easy and re-acclimate all weekend long! Visitors are welcome in intervals, as not to be overwhelming, but there’s one stipulation: you must bring a casserole/baked good! 🙂

It’s so nice to be writing this in bed with my husband laying next to me watching Friends! It’s surreal after two months of sleeping apart and communicating sporadically through texts or Instagram! It’s time for the next chapter of our lives- it’s time for Post-Transplant!

Xoxo, Amber

One Month Lungaversary

It’s been a whole month since Andrew’s lung transplant! Can you believe it?? So much has happened in a month, and so much has happened since my last update!

Andrew is eating whatever he wants now, he’s down to only one chest tube (although that should come out today), he’s taking all of his pills orally, and walking/talking so much better! Yesterday he walked a 1/2 a mile! We just need to put some meat on his bones and bring him home!

So when can he come home? Well, Andrew has Medicare and, up until a few months ago, had Medicaid. Unfortunately there was a paperwork lapse and he was dropped from Medicaid. Without it, the price of his hoards of transplant meds are astronomical, so we are A) waiting for his Medicaid application to get approved and B) beginning to do some fundraising. I will update with the info for the fundraiser on another day as it is still all getting worked out by our AWESOMELY AMAZING band of fundraising friends!

But for now… We just keep doing what we’re doing and hope that Medicaid approves his application soon so he can come on home!!!

Xoxo,
Amber

Time for another update!

I know it’s been a little while since my last update. But it’s been for good reason. We had another complication pop up and I wanted to wait until it was resolved before updating… Which means that it’s been resolved!

What kind of complication you ask? Well, you see, CFers most often have issues with their bowels. Sometimes, the mucus affects their pancreas, which causes malabsorption and lots of pooping. Because of all the pooping, their bowels don’t have time to get any mucus obstructions, which is super common. Other CFers who don’t have the pancreas issues will have common bowel obstruction issues because mucus will build up in the bowels and cause a back up. In Andrew’s case, he’s always had pancreas issues, which means LOTS of pooping!

Unfortunately, because he was asleep so long, his small intestines did have some mucus build up and he wasn’t able to pass anything. The first solution was yet another surgery. They even had him on the Operating Room schedule for last Tuesday AM -after spending yet another weekend in the ICU- but, thankfully, decided the risk was greater than the reward to operate again and cancelled the surgery, hoping that there may be some other tricks to try first.

Luckily- they were right! It took a long time, but as of 4am Sunday morning, he is a pooping man again! This weekend held so much relief for both of us! He got a couple of chest tubes out, he pooped, he’s walking 3-4 times a day (about 1000-2500 ft total), his speech is improving a little bit every day, and he’s CLEAN SHAVEN! No more lung-off beard! But the biggest relief of all? His breathing. It’s perfect. No coughing, no shortness of breath, no labored breathing. These lungs have been a gift worth fighting for and we will continue to fight for them!

What’s next for Andrew’s recovery? He’s really hoping to start eating today or tomorrow, taking his meds orally, getting rid of these last two chest tubes, and get all of his wounds healed up! Plus rehab, rehab, rehab!

We’ll keep you posted as things progress and hopefully be able to update from home soon!

Xo,
Amber

Movin’ on up!

Yesterday evening Andrew got to move up from ICU to the “Step Down” unit! No more glass doors and constant commotion, so hopefully this means he’ll be able to get back on a regular sleep schedule. It’s been super hard for him to get back in the swing of a routine with all the new meds and the fact that he slept for so long. Maybe this will help!

Another good thing: he’s totally off of oxygen now! What a difference for him! He still hasn’t gotten his clarity or speech back, but he is responding well and everyday we’re able to have more lucid conversations! One thing his doctor said is that with the extreme blood loss and drop in blood pressure, his brain lacked the right amount of oxygen for a while. So, hopefully, as he gets more active the blood will continue to flow in the right direction.

For the record, he’s so ready for the following things: Exercise (he asks everyone who comes in if they’ll do exercises with him- he’s gotta work on his walking first though) Food (he was dreaming about food today during a nap because he kept lifting his hand up to his mouth) and a damn Coke (he’s even tried to “persuade” me into sneaking him one)! He hasn’t been allowed to eat or drink yet, his tummy hasn’t woken up fully so it could be dangerous for his bowels, but when he does he’s gonna be the happiest guy in town! And someone better give him a Coke!

More updates to come but keep those good vibes coming his way!! He loves all the encouragement and motivation!!

Xoxo,
Amber

A Great Weekend

This weekend has been another good step for Andrew! I mean that literally since they’ve gotten him up and walking around! On Saturday he made his first lap around the ICU and he was so proud of himself! Today he finished a lap and a half with a little (very little) dance in the doorway.

His speech is improving slowly, but since the ventilator tube he had in place was so large, and was there for so long, his throat & jaw have to loosen up quite a bit more. He’s also still pretty loopy from being sedated for a week, but he’s making a valiant effort to slow down and try to work his mind to say what he wants to say.

The best part about this weekend though is that his silly personality is shining through! He’s had myself and the nurses all laughing! Saturday he was using a swab to moisten his mouth and when he was done and handed it to the nurse he said “that’s the good shit”. Today we were “chatting” and he kept saying the same thing in gibberish over and over. I kept asking him to slow down and repeat, but he kept saying the same thing. Then he started laughing and said “Gotcha!”

To say it’s been a good weekend would be an understatement! I continue to be so proud of how hard he is working!!

xoxo,
Amber

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