6 Things We Learned In Chincoteague

We honeymooned in Chincoteague Island 5 years ago. It’s our favorite place in the world, partly because of that reason, but mostly because it’s just an awesome place to vacation. It’s a beautiful, laid back town with enough to do to make it interesting, but not too much to do, which helps you just relax and enjoy the company of the person you’re with. 

This year before we left we decided to sign off of all social media for the entire time we were there. A complete break from instagram, facebook, twitter, messenger, snapchat, pinterest, and email. No notifications, no checking, no peeking…heck we even got rid of some of the apps on our phones and hid the rest so there wasn’t a chance of some notification popping up. It’s strange to take a step back and realize that our modern society is so attached to a completely voluntary service that 90% of the time we don’t use or enjoy.

Not only was it the probably the best vacation we’ve had since our honeymoon, we learned a lot about ourselves and our relationship when we unplugged and took to the beach. Here’s what we found:

1. Don’t compare you and your life to someone else and their life.

No social media means we didn’t have to see who’s having babies, who’s at a sunnier beach than us (see #2), who is making more money, who owns a house, who has a better job, who has this, who has that…who cares! I’m me, you’re you. You’re you, we’re us. That’s how it’s supposed to be. I’m all for aspiring to be a better person, it’s actually my job as a coach. But as a coach it’s my role to help people become better versions of themselves, not to turn into someone else. When we are constantly barraged with pictures and stories of what people post about their lives, we get this false sense of their seemingly more perfect life, when in fact we all know how easy it is to only post our best selfies, our most epic stories, our shiniest moments, all while shading our flaws, shortcomings, and failures. And let’s say you do know someone who has everything you think you want in life, why are you watching them live their life at the expense of living and enjoying yours? This goes for both individuals and couples. When you clear your thoughts of virtual life-highlight-reels and sit back and look at your life and your life together couple, it’s so much better than you can imagine.

2. It’s not about the weather, but who you spend the day with.

We had one sunny day at the beach of the 6 days we were there. All of the other days it was either rainy, or cloudy and extremely windy. That didn’t matter. We still went to the beach every day, set up our chairs (and normally some sort of wind/sandstorm barrier), and talk/yelled over the wind while watching the turbulent ocean in front of us. When you’re with the person you were made to be with, it doesn’t matter what situation you’re in, you’re going to have a good time. We people watched, talked about the future, sang together, made up jokes and games, took pictures - I’d do gymnastics tricks in an attempt to impress Rachel and she’d flirt back...It was like we were dating again or on our honeymoon (neither of us had smart phones throughout all of those times too). The weather could have been better, but it didn’t affect our time together. 

Bad weather can be a lot of things for different couples. When we were first married it was the daily struggles of Rachel's CF. Then one year into our marriage it was the hurricane of her lung transplant and recovery. More recently it's been the ups and downs of job, money, housing, volunteering, and general life issues that come along the way in any marriage. Throughout it all we've come to understand that the perfect day has nothing to do with what happens, but who you're with. 

3. Find something new to love about the person you’re with.

I’m a very competitive person, Rachel is not. I would have agreed with that statement before she introduced me to the dice game, Yahtzee. After winning the first time I played it, I learned that this woman has a competitive side that is better not to cross. It’s also extremely attractive, but that’s beside the point.  We played every day at lunch while I grilled at the hotel we were staying, and we’d play every night by the bay after dinner. We played more Yahtzee in 6 days than most people play in their lives. I loved seeing her do Ray Lewis’ signature “Squirrel dance” when she’d win, or give me a look of death when I’d win by 2 or 3 points. But most of all I loved that after 5 years I saw yet another side of my wife, and I can’t wait to love something new about her in 5 more.

4. Always be on your honeymoon.

One cloudy day we went around to the local shops and found an antique shop run by this elderly couple. When we were leaving the man was taking over the register to give his wife a break. He struck up a conversation with us and laughed when we told him we had been married for 5 years.

“Oh my, that’s a long time…” he joked.

“How long have you all been married?” I asked.

“Sixty-three years now.” He said. “And we’re still on our honeymoon.”

I’ve heard that once before, and it was from my father in reference to my mother. That’s something I love about relationships that have lasted as long as this couple and my parents: they just keep loving each other like newlyweds, long after the actually honeymoon phase. And as a relatively newly married couple by comparison, it’s inspiring to know that this is not a passing blissful peak in a marriage. With the right nurturing and care, a relationship can most certainly be just new after 63 years. In fact, my #3 on this list came from the older gentlemen when he told me the best thing about his marriage has been learning something new about his wife every day.

Oh and before leaving I told him to watch out, we were going to catch up to them some day.

5. Celebrate Everything

While on vacation we celebrated 8 years since our first date and the night I asked Rachel to be my girlfriend. We always celebrate this anniversary along with our wedding, her transplant, the animals' birthdays...heck, we even exchange little Hannakah and Kwanza presents just for fun. Making a big deal out of little things is kind of a large part in our relationship. We know all too well that life is too short not to enjoy every little moment. I was away as a leader at Younglife camp for our wedding anniversary over the summer, so this trip was our late, but not neglected, celebration of 5 years of marriage.

Another thing to celebrate while here was Rachel's personal accomplishment of climbing to the top of the famous Assateague Lighthouse. The trip was close to 200 steps up a tiny spiral staircase up to a windy lookout over the two islands. It was the most amazing thing to watch as Rachel climbed up landing after landing of the winding stairs without getting out of breath. 4 years ago she would never have made it up even two of the landings without having to stop, cough, and catch her breath for a few minutes. And she definitely would never have made it to the top before having her new lungs. We always take time to acknowledge and celebrate in some small way any time we experience something that wouldn't have been possible before the transplant. 

It shouldn't take a transplant for all of us to celebrate all the accomplishments, triumphs, and anniversaries, no matter how small. 

6. Relationships run better when there’s no screen in between.

In addition to not having an outlet to view people to compare ourselves to, eliminating social media also meant eliminating an extra person from any given moment. We no longer had to wait for the other person to finish a text to talk or have to ask “what are you looking at?” only to be answered with something like “Oh so-and-so’s asthmatic dog” or “A meme about Elmo’s upcoming gender reassignment.” (Minus 1 if you googled that last one.) We had each other’s full attention and knew that every word, laugh, smile, and thought for those 6 days was shared with the other person. By the end of the week we were talking about things for much longer and on a deeper level, discussing future plans without distractions or comparisons, and laughing until we cried at jokes we would simultaneously make after seeing the same things happen together. 

Now that we’re back, the phones are still "off the grid." I know for our jobs and keeping up with family and friends some we’ll get back on eventually, but we’re really not in any hurry. And once we do start using social media again, we’ve both already come up with personal guidelines for ourselves in order to extend this feeling we have together and prevent any outside influence from spoiling our pursuit of a perpetual honeymoon. Hopefully something here will inspire you to do the same. It doesn’t have to include a beach trip, but it definitely helps. It also doesn’t have to be anything remotely like our experience, because it’s your life, and your experience. 

Just try turning off the noise to find exactly what that looks like for you and the person you love. 

P.S. To be true to my earlier statement about not comparing yourself to others and how easy it is to post only the photogenic shots from a vacation...here are the less than perfect, but just as fun parts of our vacation: 

                        

Now X out of this window and go talk to someone's face for a bit.  

4 Years: The Limits of Your Experience

“You fail at the limits of your experience.” As a coach, this is a motto I use to train both myself and athletes in any sport. Simply said, if you've never experienced the worst in your training, how will you respond in competition when you’re tested? The same motto goes for testing our resilience during struggles in life. The more you've been through, the more you can handle. But how can you handle something like a double lung transplant less than a year into your marriage? Or multiple hospitalizations for complications during the first year of recovery? How do you face hell? In this case, you have to rely on something outside of yourself.

Rachel and I will celebrate 5 years of marriage this July 10^th. I know that doesn't seem like a long time to be married and be giving marriage advice, but when you consider the divorce rate among young couples in the first 5 years (20%) and maybe .001% of those had to deal with transplant due to a terminal illness, I’d say we’re off to a good start. I hide notes around the house for her every morning before I leave for work, I’m excited to come home to her every evening, and I would rather spend a night in with her watching Netflix than being out with anyone else. Rachel cooks amazing dinners for us every night that we eat together, she texts me little updates throughout the day, and she’s the first person to take my side when I come home frustrated about something. There are a million of those little things that make me realize how amazing it is to be best friends with my wife. Blech, too corny, right? I know, because when I say things like this, people occasionally roll their eyes and say, “Yeah, but you all are different.” As if the only reason we’re so close is because we went through the transplant 4 years ago after suffering together through CF for 3 years before that, and Rachel going through hell for the first 24 years of her life. But what people fail to see is that although we've had our relationship tested with this illness, we’re also tested everyday with the fact that WE’RE A MARRIED COUPLE. We have the same disagreements, financial issues (transplants aren't cheap, people), worries about the future, job struggles, family emergencies, and differences in personalities that every other couple has. When you have something like a transplant in the first year of your marriage, you kind of skip the honeymoon phase and go straight into the “life” part of marriage. Many of the challenges of marriage only showed up after the transplant and subsequent complications. And yes, having faced death made them seem less important and easier to deal with, but at the same time, they’re still challenges that break many marriages that didn't start the way ours did. So on one hand, the limits of our relationship experience were pushed because of the transplant, but we still had not experienced the specificity of everyday marriage issues until afterwards.

     

As we edge towards the limits of our experience, the inevitability of failure arises. But as I always tell my athletes as they reach those limits, “Failure may be an option, but quitting is not.” When faced with the news that Rachel needed a transplant, it broke us down. But we didn't quit. The transplant pushed that boundary forward, and it broke us too. But we didn't quit. New boundaries were tested as we began a more “normal” married life, and we face each challenge together as a couple, but many times it breaks us too. But we do not quit. It’s our faith in God and the foundation of our marriage based in an unbreakable vow between husband, wife, and Christ that allows us get back up after failing at the limits of our experience. We would fail at these limits or quit when we do fail if our strength was our own. It’s our firm grasp to a strength outside of us that is our strength inside our marriage. I have all of my athletes build a strong foundation of physical strength in order to be able to face the unknown and unknowable in their sport. In our marriage, our bond in Christ is that foundation of strength that allows us to face the unknown and unknowable in our life together.

So yes, we are different because of what we've been through, but we’re also just like you. And none of this is to say it’s product of any of our own power - in fact it’s the opposite. Christ alone is the reason we’ve thrived over these past 4 years after the transplant. I thank God for every second he’s given me with Rachel and for every struggle He’s brought us though along with way.

Happy 4^th Lungaversary, Sweetheart. 

2 Years

Two years have gone by since God blessed Rachel with her new lungs. Without a doubt this past year was much better than the first year post transplant. The first felt like we were trying just to keep her lungs, this year we got to enjoy them. Rachel’s lung function is now above 100%, compared to close to 20% the month after we got married.  The miracle of her beautiful lungs is something we thank God for daily.

Last year on the anniversary of her transplant, I posted all of the Facebook status updates I was sharing throughout the stay at the hospital to recap all that happened. That entire first year, including the transplant itself seemed to be blocked from our minds because of all of the horrible things Rachel had to go through. It’s amazing how sometimes God can blind the sour moments of life with the memories of the sweet ones.

This year we’ve been able to look back and see a little more clearly. We’ve also been able to talk about aspects of the process that were just too painfully recent to bring up until now.

I’d like everyone to know, we are extremely happy right now and Rachel is living the best year of health she’s ever had. That being said, this anniversary is bittersweet. We appreciate all of the good thoughts and well wishes, but this isn’t exactly a birthday.  We (along with all of you, I’m sure) celebrate Rachel’s new life year round, while the anniversary of the surgery is something more of a somber occasion.

That being said, I’d like to reflect on a couple different aspects of the process that have been on my mind this year:

The Call:

It will be 2 years since we got the call on February 25^th. Rachel and I were in the car driving back from Walmart and Katy Perry’s “Firework” came on the radio. I remember turning it down as she answered her phone and held my breath as my heart started pounding. She started crying while talking to the caller and I felt my heart rise up to my throat. It was one of those situations where you always play out in your head how you’re going to react, but nothing can prepare you for the real thing. I knew right then that our life was about to be turned upside down, and that no amount of mental preparation could take care of what was in God’s hands now.

Every time that song comes on the radio, I get the same feeling: that helpless surrender to something you know is bigger than you. (This is probably one of the few times in history that Katy Perry will spark someone’s emotions to pray for something other than her song to stop being played on the radio)

The Night Before:

Once we got to Hopkins they prepared Rachel for the next morning’s surgery. Her parents slept in the waiting room and the nurses allowed me to sleep in the hospital room with Rachel. I watched her fall asleep in my arms and tried to do the same, but it was impossible. I felt like a child. I felt helpless again, wondering if this was the last night I would get to spend with my wife. I thought that if I stayed up and didn’t sleep, I could somehow slow time a bit to savor this moment I had with Rachel. I didn’t want to fall asleep because I knew what the morning brought. I prayed and prayed, but I still couldn’t shake the feeling of what I had read about the surgery, the success rates, the recovery process, and all the risks involved. My fear was blinding me from seeing what God was about to do, and I regret that. It was by far the worst night of my life.

Before Surgery:

Early the next morning they came to take Rachel. This is the hardest part for me thinking back. I kissed her and told her I loved her. We always said, “I love you” and never “goodbye” because to us, “goodbyes” are unnecessary. We know that no matter what happens, we’ll be together one day in heaven. As I held her hand for the last time as the nurses wheeled her bed into the hallway, I experienced something I pray no husband or wife has to go through. I remember running through every memory I had of my relationship with Rachel. I remember staring into her eyes like I was burning a permanent picture of her at that moment into my mind. I prayed again that this would not be the last time I said, “I love you” to my Rachel on this earth. I told myself that she was in God’s hands, and that was the only way I could find comfort in this situation. Miraculously, after the horrible night before, I experienced something I remember singing as a kid in Sunday school, a “peace that passes understanding.” I knew she was going to be OK. I know people will say that it was just my optimism making the best of a situation I couldn’t handle, but this was different. Optimism can comfort, but it’s Faith that assures.

After the Surgery:

After the 8 hours of surgery, doctor came in and told us that everything had gone well, that the lungs were beautiful, and that she was about to come out on her way to ICU if we wanted to see her. Before long she was wheeled past us in her hospital bed. She looked gorgeous. It was like seeing her for the first time at the concert where we met. It was like seeing her come down the aisle at our wedding. It was like the future when we see each other in Heaven. She went through the hall quickly and as soon as she left, I burst into tears for the first time since crying with her the night before. I had no idea what we were in for over the next year, but at that moment, everything about the transplant was perfect.

“I need three hands”:

As Rachel woke up in ICU while still on the ventilator, they called us (Sam, Karen, and I) up to her room. She couldn’t talk with the tube in her mouth, and her eyes were still closed, but she was able to hold our hands one at a time. We were all on one side of her bed and she made her index and middle fingers make a walking motion around to the other side of the bed. She then started to sign the number 3. All three of us standing there were talking it through trying to figure out what she needed. Poor Rachel kept getting frustrated with our ineptness at understanding post-op sign language but we finally understood her when she signed “I need three hands.” We were all able to hold her hands around the bed. It was one of those surreal moments that you only see in movies. I remember walking out of the room with a huge smile along with Sam who was as speechless as I was.  We both are huge film fans, but this topped any scene of any movie.

Her Sleep:

The 12 days she spent recovering, I spent as many nights as I could sleeping in her room with her. As she slept I’d either pace the halls of the hospital, or sit next to her bed watching with tears in my eyes as she took her the deepest, most beautiful breaths I’ve ever seen her take. The whole time I listened to the first Mumford and Sons’ album. Especially “Sigh No More”

Singing quietly the lyrics:

 “Love; it will not betray you
Dismay or enslave you, it will set you free
Be more like the man you were made to be
There is a design, an alignment to cry
Of my heart to see,
The beauty of love as it was made to be”

I still can’t listen to that song without feeling those same tears of joy starting to well up. My love for Rachel, her love for me, God’s love for both of us, all of it so perfectly described and beautifully written.

Looking back at what I’ve just written, I realize some of those don’t seem like the happiest moments, but they are what have been on my mind recently. We have had the best time the past year enjoying the new life God has given to us.

All of those memories bring up two thoughts I’d like to share with you:

If you got “the call,” if you had to spend the last night with the person you love, if you had to say “I love you” before possibly not seeing them again…what would you say to them?

My relationship with Rachel has always been about living every second like it could be our last. But why should it take a terminal illness to make us live like this? None of us are guaranteed another minute on this earth. You have to make the best of the life God has given to you.

Thank God for your life no matter how bad you think things may be. Tell someone that you love them like it’s the last time you’ll be able to say it to them. Don’t rush your life, but live and love every second to the fullest.

Or to take from Mumford and Sons’ newest album: “Love with urgency but not with haste”

Secondly, there will come a time in your life where you will face something beyond your strength. Something not you or anyone in this world could possibly handle. Rachel and I only made it through all of this because of our faith in our Lord Jesus Christ. The strength we had and still have comes from a power greater than ourselves.

Philippians 4:13

“For I can do everything through Christ, who gives me strength.”

It's been a long time!

I can’t believe how bad I am at keeping a blog. 8 months since my last post?! I guess when I’m feeling well it is harder for me to sit at my computer! So much has happen since June…I’ll give you a short over view.

We had a wonderful summer! We added another hermit crab, Rowdy, to our family. He only live about 3 months, so that was sad. Now we are down to Peeta and Hammy. Our 2 year anniversary was July 10th so we packed up and headed to our favorite place…Chincoteague Island, VA. I turned 25 in August. We moved at the end of September. Our new apartment has a washer and dryer which is life changing when your husband’s career is sweating and making other people sweat.

Another reason we moved is so we could get a dog! Jonny told me over a year ago that since I have had to give up and miss out on things because of my health, he wanted to make a sacrifice and get me a little buddy to hangout with while I work from home. On October 22nd, Gracie Bear Slick came biting and squirming into our life! She is ¾ Yorkie and ¼ Poodle, but you’d never guess from looking at her that she has any poodle in her. She loves to play, would be outside every moment of the day if she could, and is constantly melting me with her cuteness! Of course, I still miss Jonathan while he’s at work, but I don’t get lonely when he is gone. She has been such a blessing…I don't think Jonathan would agree, but he doesn’t mind her as much as he thought he would. We are currently in the middle of puppy obedience school. She might not be the best listener in her class, but she is for sure the most adorable. God made her especially cute because He also made her especially bad! She has enough energy for about 6 puppies and potty-pad training has been, well, not so easy. But I love her and I wouldn't trade her for any other pup in the world.

My health has been amazing. In my last post I was bragging about my 85% lung function. Dr. Orens had said he didn’t think it would get any better. I am so happy to say that he was wrong! About a few months ago, I was at Hopkins for a regular 3 month check up and my lungs showed them who’s boss with pfts of 104%! How can I have lung function over 100%? They have a number that the average girl my age and weight should be able get and they call that 100%. But my lungs are way better than the average girl! Dr. Orens said I am in a really great place for being almost 2 years out. This is what my God can do.

I hope to do a better job with keeping up our blog. Thank you for all of your thoughts and prayers! Now the best part of the blog...puppy pictures :)

Love,

Rachel

My little sweetie just the other day!

Favorite napping spot...the very tip top of the couch :)

The closest thing we could get to a Christmas picture. She never stays still for long!

Gracie Bear Slick on the day I brought her home!

Spring!

I have a few minutes before I need to start getting dinner ready so I thought I’d let you know what has been going on in the Slick nest…

March and April flew by! I was given 2 weeks of IV antibiotics for a lung infection that I didn’t even know I had. At the beginning of March I was scheduled for my 1 year bronchoscopy and one of the biopsies showed a little infection. It took a while, but my pfts bounced right back and looked better than ever! We celebrated Jonathan’s 23rd birthday at the end of April. Growing up, my mom always decorated the kitchen and living room with streamers and balloons so when we woke up the next morning, it would already look like a party! And even though Mary and I have birthdays 4 days apart, we each had a totally different set of décor! So naturally, I wanted to deck out our apartment in true Meroney Birthday style for Jonny. The night before his birthday, I told him not to come in the living room until I said so. I was climbing all over the furniture, jumping on the couch to stick streamers on the ceiling, and of course there were balloons to blow up. I saved those for last because even though I have great lungs, I’m not exactly used to blowing up balloons! But it was no big deal. I just stood there and blew up 5 of them…no problem. I couldn’t believe it. I just burst into tears. Jonathan could hear me from the other room and told me he was coming in weather I liked it or not! And he looked at the balloons and picked me up and held me. Up until April I didn’t quite feel like this whole transplant thing was really turning out to be what they said it would be. Yes, my quality of life was so drastically improved, but it was still so challenging. And that night I could really, honestly say, ”This is totally worth it.” I wish I could tell you what it felt like. To be able to physically see a change…I will never forget those 5, beautiful, green balloons.

May was exciting and full. My 3 homeschool ballet classes had their recital! They performed at The Maryland Theater which was probably more exciting for me than it was for them. All growing up Ballet and All that Jazz held their performances at the theater. And now, my own class was performing. I was so nervous that morning, but as soon as I stepped on that stage, all the nerves settled down just like they used to. All my darling little ballerinas danced their sweet hearts out. And that is another experience I will never forget.

June has been rather crazy! We are trying to figure out where we are going to live…and that is not a fun process. Jonathan has promised me a puppy and we cannot have one where we are now. So that is a big source of motivation for me! Every other week I get together with one of my dearest friends in the whole world and we day dream about Jonathan and I moving into the neighborhood she and her husband and 3 girls live in : ) But, we will see what happens!

Last week we suffered a tragic event in our family. Irwin, our first born hermit crab, died. He had moved into a shell that was way too big for him and he couldn’t really move…I kept helping him get in the water dish, get in the food dish, crawl around a little…but sadly, it did not help. After that, Woody and Peeta thought now would be a good time to make a move too, so after 6 days of musical shells (Woody changed 7 times and Peeta 2 times) Woody has settled into Peeta’s old shell, and Peeta is in Woody’s old shell. I can tell because Peeta is missing half of one of his legs…

The last event I’ll tell you about is today. I went for my 3 month check up. It was amazing. I guess I must have looked really terrible when I was sick and no one told me…because now that I’m well everyone is saying how great I look and how healthy! My coordinator Brian said I am lookin’ so good I made his day! Dr. Orens looked at my CT scan from this morning and said my lungs look “beautiful”. Everyone is happy with my 85% lung function. I even get to stop the one drug that has been giving me extremely bad problems with the sun! Hello, beach : ) I saw my CF doctor in the hall today and he was so happy to hear how well I’m doing. My CF doctors and nurses are some of the most amazing people and although I’m happy that I don’t have to see them for treatment, I miss each one of them : )

Well, I’ve got some dinner to make for my wonderful, sweetiepie husband <3

Love,
Rachel
Genesis 18:14

Toughest on Earth

It’s been a couple months over a year now and Rachel’s lungs are doing great. She had a staph infection about a month ago and had to go on IV’s for a few weeks, but she’s bounced right back and her PFT numbers have come back up again. We are currently in the process of remedying another malady though: muscular damage.

For over 4 years leading up to the transplant, Rachel was on high doses of steroids to keep the inflammation down in her lungs. These steroids masked many other symptoms and also caused her body to not heal damaged tissue. Now she’s taking 1/12 of the dose of steroids she was on before, so injuries that could have happened months or even years ago are starting to show up. Last August, Rachel began experiencing pain in her hips, especially when seated. It’s gotten progressively worse and a few months ago she had an MRI to see what was going on. The scan showed that she has a torn labrum (cartilage) in her left hip, a bulging disk in her lower back, a swollen quadratus femoris (an external rotator in the hip) in her right hip, and a partial thickness tear of greater than 50% in her right leg. Being the tough girl that she is though, it took a while for her to get fed up with the muscles that weren’t healing with rest and go see an orthopedist to see what we could do to fix it.

Enter Dr. No. We’ll call him Dr. No because I believe his full name is Dr. Nowayamianactualdoctor. I won’t go into detail, but when I have to explain an MRI reading to a doctor who “can’t tell what he’s looking at” and is skeptical of my wife (you know, the girl who went through the largest thoracic surgery one can undergo) when she says she’s in a lot of pain…that’s not going to work for us. Rachel booked a meeting with a different doctor that we’ve heard a lot of good stuff about and hopefully we can get a physical therapy plan together to work on healing the torn muscles, and calming down the swollen ones. When it hurts to much to walk outside and enjoy your new lungs, it’s more than a little frustrating…

I’m writing this because I know Rachel probably won’t. She doesn’t like to complain and doesn’t want people to think she’s constantly whining even though she’s constantly in some form of discomfort. Rachel is tough beyond what anyone I know considers tough. The other night we were watching a video of Annie Thorsdottir, the winner of the 2011 Crossfit Games which earned her the title of the Fittest Woman on Earth. Picture a young Icelandic woman’s head on the body of male gymnast on steroids (different kind than Rachel’s) and that’s Annie. Better yet, Google her name for yourself and watch her throw heavy weights around, walk on her hands, push 200lb sleds across concrete, and outsprint groups of male athletes (many of which are smaller than her). Anyway, after finishing one of the videos that night, Rachel sat back and calmly said “I’m tougher than her.” There was no argument there. It wasn’t a statement of pride, it was just a statement of the fact that my wife has gone through a life that requires a kind of mental tenacity that not many other people posses. Being that tough is more than just surviving difficulties, it’s striving despite them. Rachel’s positive attitude throughout her challenges is a testament to her personal resilience and steadfast faith in God to give her the strength she needs.

Annie Thorsdottir might have earned the Fittest on Earth, but Rachel Slick got Toughest on Earth.

The Transplant in Statuses

Below are all of my facebook updates during the transplant hospitalization If you have time, go back and read the blogs from these dates as well...

2/26:  "Rachel was taken back into surgery at 6am. She's doing great with everything and appreciates all the prayers. The procedure can take up to 8 hours, but I'll be with her 45min after she comes out with her two new, CF-free, lungs. God is good. 

Just saw the box containing the new lungs roll past the waiting room. Rachel is doing great and about to receive them! 

Rachel's new lungs are placed in her and being sewn in now! 

SUCCESS! Lungs are in for good and Rachel is doing great! Lungs were a perfect match, no damage, and she didn't have to go on the heart-lung machine! A perfect surgery. Keep praying as the next few days are critical in her recovery. God's the man! 

Just saw Rachel come past the waiting room. She's sleeping and looks even more beautiful than ever (if that's even possible). Doctor said the new lungs are gorgeous. The docs will wake her up later tonight and make sure that she can move everything ok. She'll be on a ventilator until tomorrow morning. 

Just got to kiss my wife on the forehead...the simplest thing feels so incredible right now. She's receiving her epidural now which will allow her breathing tube to be easily removed tomorrow. Her blood pressure is down a little, but that's normal after this kind of surgery. The X-Ray of her new lungs is textbook perfect... we couldn't have asked for a better pair. 

Rachel is awake! She was able to use sign language/finger spelling to talk to me and her parents just a moment ago, in probably the most moving moment of my life second only to our wedding. "I love you forever" signed into my palm about did me in. Her blood pressure is now normal, O2 level is great, and body temp is awesome...her nurse told me that this is the best transplant she's ever seen at Hopkins. 

2/27:  Rachel breathed on her own with her new lungs for the first time around 1am this morning! This was just after they took her off the ventilator and she had the difficult task of learning to breathe again. We saw her shortly after and were able to talk with her. She says she's breathing so much better already and not in a lot of pain. 

I walked down the hallway of the ICU with Rachel just minutes ago. Less than 24 hours after her lungs were in and she's already walking. It's amazing. She's breathing great but VERY tired from all the meds and the adjustments to her new lungs that her body is making. 

Rachel is still doing great, but please pray for Rachel's thirst to dissipate and for her swallow test to be scheduled soon so she can drink. And also for a room to open up so she can move to a regular room and out of ICU. 

I just helped wheel Rachel from ICU to a "high level" regular room! Normal time in ICU is more like 3-4 days post transplant, but God has different plans for my girl. I get to be with her tonight. Pray that we both get some much needed sleep and continue to pray for her thirst/swallowing issues. 

2/28:  Rachel did well enough on the swallow test to start eating pudding/yogurt as soon as her Dr's give the OK. Pray that they do. She also walked a whole lap around her recovery floor, impressing all of us and the staff again. 2 more chest tubes were removed today and the picc line was put in. 2 more good things. Also, we appreciate everyone's support, but we'd rather wait to have visitors once we get home. Thanks! 

Thank God! A meal is coming to Rachel! It will be the first fod she's eaten since 9pm Thursday night. It's only things of pudding-like consistancy, but it's still food. She's so encuraged and excited. 

3/1:  My girl beat everyone on her floor on the "lap around the nurses' station race"! Ok, it wasn't really a race, but she still flew past two old dudes like they were standing still. Doctors are thinking she will be sent home next Monday or Tuesday! She just has to pass another swallow test tomorrow or Thursday, be able to walk up stairs, and get her last chest tube taken out before she can come home. 

3/2:  Just had a good meeting with our transplant coordinator, prepping us for life at home. Rachel's in a little more pain today, but still feeling great overall. They might have to put a small chest tube back in that came out yesterday to help a lung fully inflate, but the doctors aren't worried and it's not setting us back any. 

3/3:  Rachel just passed her swallow test! She can now eat and drink whatever she'd like! Let the Mountain Dew start flowing and the chocolate start piling up...she's got a lot of catching up to do after 5 days without eating or drinking anything except "honey-like" liquids and "mechanically soft" foods. 

Rachel's last remaining chest tube was taken out today too! All she has to do is walk up some stairs and we'll be ready to go! 

Rachel just walked 6 laps around her floor with me! This doubles the amount she did yesterday and set a PR for laps completed in a day. She's definitely going to be a threat on the race course before long... 

3/4:  Rachel's doing great this morning, but in a good bit more pain. They're switching her to an oral pain med and taking out the epidural soon. She's also having a bronchoscopy ("lung vacuuming") at 1pm to clean out anything in her lungs. Luckily she'll be asleep for that. 

Rachel just finished her bronchoscopy that went very well. She's coming back up to her room in a little bit. She'll be on facebook before long, so...if you have a picture of you and Rachel, post it as your profile pic and post something on her wall. She'll love it... 

Rachel's 8 laps = 3 football fields...just to put in perspective the distance my recently lung-transplanted wife just walked. 

3/6:  Please pray for Rachel this morning, as she's in the most pain she's been in since surgery. The numbness is wearing off and it hurts for her to take the deep breaths she needs. She's still doing really well though and is keeping her incredibly positive attitude throughout it all. 

3/7:  Thanks for the prayers, Rachel is doing 100 times better today. She's already walked twice, done a bunch of deep breathing exercises, and is able to cough with much less pain. The doctors are working towards us getting out of here tomorrow...pray that it happens and that Rachel continues to feel better. 

Got a call from the home care coordinator who is working on getting us out of here around 11am tomorrow...keeping praying that this happens. Rachel has walked 11 laps total today! She's also done a ton of breathing exercises and even walked some stairs. We'll be home soon! 

3/8:  Dr. came in and said that Rachel is ready to get out of here! Either late today or first thing tomorrow morning...we're REALLY hoping for today. 

Well, we won't be home until tomorrow around 1pm, but we're still coming home! 

Spoke too soon again...we might not be home until Thursday if certain kidney and blood levels don't even out. This is getting a little frustrating. Pray that everything works out and we can leave tomorrow as scheduled. 

3/9:  No go for leaving today. Maybe tomorrow morning if Rachel's kidney levels go down...possibly not 'til Friday. We've been hearing "Maybe tomorrow, but probably the day after" since Monday. At least Rachel's feeling great and her parents are headed home for some much needed rest tonight. In much less important news: I've made a great gym out of the fire stairwell ever since we checked out of the hotel with a gym. 

3/10: Lab work is being sent off...come on creatinine level, go down so Rachel can come home! Oh, and 18 laps (740 yards) yesterday? Yeah, that's my wife.

COMING HOME!!!!

I just made dinner...in our house. And I made it for my wife...who can finally breathe."

So here we are, one year later. We've gone through a hospitalization for kidney failure just weeks after Rachel's transplant, another stay for kidney failure a little later, an admission for a blood infection, and another stay for mild rejection all before August of the first year. At home she's been through continual pain from the surgery, sickness from the medicines, torn muscles from being on high doses of steroids, and many other maladies that no one should have to endure. I'm not reminding everyone of all this to draw pity or to elicit more emotions, but rather to reiterate what God has helped us through this year, and how far He has brought Rachel. The average lung transplant patient is hospitalized 6-8 times in the first year and has a lung function of 80%. Rachel was hospitalized 4 times and just weeks ago tested her lung function at over 96%! Yes, she still has pain, still takes medicines, still has rough days, and still has many doctors visits and blood drawls, but through all of this Rachel and I have relied on our faith to get us through each daily struggle. 

The doctors told us that the first year says a lot about how your body will react to the lungs in the future. People who do well their first year, normally do well for their first 5 years after that. The better they do after 5 years, the better they'll do by 10 years. The anniversary of Rachel's transplant is less of a celebration of the surgery itself, but more of her making it through this year so well, and the hope that we have for years to come. 

Being married to Rachel is like witnessing a miracle every day, and I hope you too have enjoyed watching her exemplify strength and trust in God throughout this past year. 

One Year

One year ago today I posted a blog about how tired we were getting of waiting, how long the 109 days of being listed had been, that I just wanted to get it over with. Once again, I found myself giving up the control that I didn’t have anyway and trusting in God’s timing. And that night the phone rang. I remember how surreal it was. The lady on the phone sounded so calm and pleasant. “Hi Rachel, Dr. Shah would like you to come down to Baltimore tonight and have your lung transplant in the morning.” I remember exactly where we were on the Dual Highway, exactly what song was on the radio, exactly what it felt like to choke the tears down as I finished the phone call.

Everyone keeps saying, “Congratulations!” and “Wow, you seem to be doing great!” when they find out that February 26th is my one year anniversary. And I probably make the strangest face back at them…trying to smile and thank them knowing that God has done incredible things in my life, but having the feelings in my heart go the opposite direction. I will be the first person to say that God does miracles, that He heals, that He does far more that we can even imagine. I am writing this right now as proof. But I am also here to tell you that it is not easy. When they warned me that the first year would be a nightmare, they were 100% accurate. They told me that transplantation is not a “fix.” It’s a trade. I can breathe now. I can go up the stairs. I can vacuum. But I still take medicines, still go to the doctors a lot, still don’t have the body of a 24-year-old. Sometimes I get so frustrated. I forget that “Here on earth you will have many trials and sorrows” (John 16:33) even if you do get a double lung transplant. I forget that there isn’t a verse in the Bible that says, “Life will be so easy and everything you do will work out perfectly and be shiny and sparkly.” Nope. It isn’t in there. Believe me, I’ve looked. But I can tell you this morning, that looking back over the last year, the times when I stopped expecting things to be super easy, when I accepted that I will have problems, those were the times that I truly lived. Because then could take comfort in the words that follow in that verse, “But take heart, because I have overcome the world.” How awesome is that? Jesus knew about trials and sorrows. He was tempted. He lost his friends to death. He was cheated. He was betrayed. He was lied to. He was hurt. He was humiliated. He asked God to change things. He trusted when God didn’t alter the plans. He felt alone. He couldn’t breathe. But He did not give up. And He didn’t just get by either. He overcame.

That’s what I want to do. I will not let this get the best of me. I will live my life, however long or short, healthy or sick, happy or sad. And no one is ever going to convenience me that I have to have a flashy career, a fancy house, tons of money, kids, a white picket fence, or normal body, to live life to the full.

For when I am weak, then I am strong. - 2 Corinthians 12:10 

Thank you for supporting me and my family through this year.  I'm so excited and so hopeful to see what God is going to do in my second year. It's going to start of with a new hermit crab to join my other two little sweeties! Jonny's lungiversary present to me :) And I'm really going to try to get better at updating our blog. This Thursday I have my 1 year bronch, so if you think of me, please pray that my lungs will be looking good from the inside and that there will be no signs of rejection.

Love,

Rachel

Ballet, Boston & the Best PFT's yet!!!

I can’t believe it’s been 2 months since my last post. I’ve been keeping busy for sure! After 8 months, I’m finally coming to the place where I can say that yes, all of those terribly difficult, uncomfortable, painful, discouraging, scary times we’ve been through in the past year have been worth it. I still have hard days, but now I notice when I don’t feel good…it used to be that I noticed when I did feel good…because feeling good had become so uncommon. When they said that post-transplant life was a whole different ball game, they weren’t kidding. I can’t express what this feels like…I wish so much that you could feel it with me : )

The other day someone asked me what the best thing has been about the transplant. Taking a deep breath is for sure #1. In the top 5 however, is being able to teach ballet again. I took ballet when I was 5 and continued to take classes through my senior year of high school. All through college I taught a home school ballet class and continued after I graduated. Last fall, with lots of tears, I decided that I just couldn’t teach any more. I had had to cancel so many classes the spring before and basically had to teach sitting down because I was so sick, I knew it was only going to get worse. It broke my heart to have to give up not only my passion, but spending time with those sweet little girls that I love so much. But God, like He has in so many other areas of my life, decided to give this back to me! I started my classes about a month ago. I will never forget driving to the studio for the first time since the surgery. I cried the whole way. Each week with those girls are such fun! I look forward to it so very much. The second week one of the moms came up to me and told me that her 4 year old daughter had asked her if Miss Rachel could come life at their house with them. She explained that I have a husband and he probably wouldn’t want me to move : ) What a treasure each class time has been.

Another incredible thing is that my lung function just keeps going up! I’m used to seeing the line on my PFT’s slowly creep down…not shoot up by itself! I keep texting Mom saying, “I just did my highest PFT ever!!!” That happened twice last week. But today at Hopkins I beat them all!!! My lung function is up to 86.7%!!! Dr. Orens came it and Terri said, “Look, Rachel is here showing off!” He took the paper and when he saw the numbers, his eyebrows went up and his jaw dropped! He told us that normal lung function for any regular person is between 80-110% (Not sure how you can have 110% lung function…I plan to find out for myself though!) and the average is 80% for transplant patients. So, I have normal lung function and above average for being a transplant patient!!! Woo hoo!!! I cried in the waiting room as I showed my mom : ) Last night in the small group we go to with our church, we were discussing if we believed that God really can do even more than we can dream of for ourselves. I’m here to tell you that He can. - For nothing will be impossible with God. – Luke 1:37

Over the weekend we were able to take a trip up to Boston to visit my sister and her husband. Jonathan had never been on a plane and he really enjoyed it! I had always dreamed of flying on a plane and holding hands with my sweetie, and now I finally have! Mary and Peter picked us up and we went out to eat in Boston. I really wanted to see the Old North Church (you know, “One if by land, two if by sea.”) and they made it happen! I also really wanted to have lobster…it was $4.99 per pound…not too much more than chicken! Peter is a fantastic lobster cook and Mary made sure Jonathan had a nice big salad to go with his lobster! Yum. It was so great just to relax with them and hang out. It was strange for me too. I’m not used to being the healthy one. Every time I would hear Mary cough it broke my heart a little. I wish so much that she could feel what I feel. I wish she didn’t have to do therapy still. I wish she didn’t have to go on IV’s. But I know that one day, her lungs, and mine too, will be completely perfect and whole and there will not be any of these hard things left to deal with. Mary and Peter are so brave…2 of my heroes. I love you both.

And, I LIKE THE LOG!!!
(Inside joke from a long long long time ago!)

Well, I think that is pretty much it for now! Praise be to the LORD, for he showed his wonderful love to me – Psalm 31:21

- Rachel

Jonny's first flight! Isn't he SO cute <3

The 4 of us at the George Washington Cage...
well, that's what the sign looked like it said anyway!

Jonathan and Peter with their new friend, St. Francis!

Mary, Peter, and Jonathan playing the extremely difficult game of
Balance-3-Forks-On-Jonny's-Chopsticks-While-Mary-Sticks-A-Piece-Of-Ice-On-Top!

Beating Rejection

It’s taken us a bit to get to get around to blogging about it, but we recently had another hospital stay…

Friday August 26^th was Rachel’s 6^th month anniversary (“lungaversary” as I call it) of having her new lungs put in. She had to go to Hopkins for her 6 month bronchcoscopy where they were going to clean out any junk that might have been there and do a biopsy to test for any rejection. Last time she had a bronch she no rejection at all. She texted me at work to tell me that the doctors said that her lungs looked good and that she could head home.

After I got off work I met Rachel and her mom on their way home from Baltimore. I picked up Rachel and we went out to eat at the Mountain View Diner in Frederick to celebrate her 6 months with new lungs. Just after we ordered Rachel got a voicemail from a doctor at Hopkins, asking her to call back as soon as possible. Rachel left the table and walked outside to cal him back. My stomach hasn’t knotted up like that since we got the call that her new lungs were in. I sat in the booth and looked out the window to watch my wife start to cry while walking up and down the sidewalk talking to the doctor. I started playing out in my mind what their conversation could be, which is never a good idea. I couldn’t wait any longer, so I got up and walked toward her as she came in. She told me exactly what I was thinking the doctor told her: her body was starting to reject the lungs.

We sat back down to the table and she told me that the rejection was minor and in the early stages, but we still needed to get down to Hopkins that night for her to be put on steroids to stop her immune system from attacking her lung tissue. Our celebration dinner turned to a quick bite before heading out the door and driving straight down to Hopkins. At this point we had both been gone from the house since 7:30, Rachel had been in Baltimore all day already, and I had not yet gotten cleaned up from work. We couldn’t waste time going home though, so we left while making calls to our family letting them know what was going on.

Traffic wasn’t terrible, but of course it had to be raining the whole drive. I dropped Rachel off at the emergency room entrance at 8:30pm, parked the car, then walked to the ER to find her. When I got there, a nurse took me back to an isolation ER room where Rachel had a bed. Thank God for that. Ever been in the waiting room of an ER in Baltimore on a Friday night? Holy cow. It looked like the waiting room of death from Beetlejuice, only more ghetto. Rachel got the special room due to her high blood pressure and heart rate, plus the risk of germs from other patients. We sat and argued with staff about medical insurance procedures (we’re getting pretty good at it) and watched TV until we got a hospital room…four and a half hours later at 1am. Down in the ER they had started Rachel on her first dose of IV steroids…500mg of prednisone! To put this in perspective, when Rachel was really sick over a year ago, they bumped her up on steroids to a level that was unsafe to stay at for very long…that was 60mg. Her maintenance dose she was on after the transplant was a 50^th of what they dosed her with. The goal was to basically numb her body so it thinks that nothing is going on. That way her immune system would stop attacking the lungs, and then her doctors would take her back down on the steroids. 

This was the weekend that hurricane Irene hit the coast, so it was kind of nice to be in a sturdy building with plenty of backup generators. We actually slept pretty well the first night, as not too many nurses came in and out. I spent the entire next day with Rachel, who despite her body not wanting to have a major organ in it, was feeling pretty good. Her lung function wasn’t down much, she didn’t have a fever, and she wasn’t fatigued. She told me that she was only faking the rejection so I’d take off work on a Saturday and spend it with her, haha.

The next morning I left to head back to Hagerstown. Her mom came down in the afternoon to be with her. The doctors came in to meet with Rachel to explain a little more about exactly what had happened. Her immunosuppressant level had dropped and her immune system started to kick in and go after the lungs at a cell level. Her rejected was classified as A2 (the scale goes 0-5), meaning that the rejection was localized in her airways. Thanks to God having them find it during her bronch, we were able to get the steroids in her fast enough to stop the rejection before it caused any lasting damage.

Monday evening my Rachel came home after a whirlwind of a weekend. We can’t thank God enough for the timing of everything. Had she not had that bronch right after the rejection started, had the doctors not noticed the rejection quickly, and had we not still been near Hopkins when they called things may have not gone as well as they did.

Thanks for the continual prayers. Medicine, hospitals, and doctors are great, but it’s through God and prayer that we can make it through bouts like this. 

Psalm 107:28-30 Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven.