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.

Rachel's Birthday Balloon

We thank God for every miracle...

Happy Birthday, Rachel!

Wow, it’s been a while since I last posted too…

Monday (8/15) is Rachel’s 24^th birthday. Last year she felt terrible on her birthday and just two days later she was hospitalized with a lung function of 23% (This was 3 weeks before my first post on this blog). It was during that stay that her doctors came in and told us that we needed to start the process to get on the transplant list. Here is a piece of a blog I posted on cysticfibrosis.com right after we got the news:

"I made a decision to be fearless"

I read this quote on the cover of men's health magazine on Friday after returning from John's Hopkins where I was visiting my wife. I read it over and then repeated it to myself. Being afraid is not a choice Rachel and I have right now. God has a plan and it's our job to trust Him.

After being admitted to John's Hopkins last Tuesday with a lung function of 23%, Rachel's doctors knew that we couldn't continue with the current plan of attack for her resistant pseudomonas. Up 'til now we've been treating her flare ups with higher doses of prednisone and IV's, but every time she gets better, she's not as good as she was the time before. Dr. Boyle and two lung transplant surgeons came in and talked to Rachel and me on Friday afternoon. They think it's time for us to begin the evaluation process for a double lung transplant in the near future. We didn't take this very well at first, but after talking and praying about it, we know it's the right thing to do.

And boy was it ever…just the other night Rachel’s lung function was over 78%! We are looking forward to this Monday, as it not only marks the anniversary of Rachel’s birth; it’s a celebration of her amazing life thus far. Rachel’s maturity was something that I always admired, but see how much she’s grown in just this past year has been incredible. She’s more confident, outspoken, and secure after going through what she did. I see it in the way she works, deals with frustrating insurance companies, talks with doctors, and puts me in my place when I’m being a 12-year old (haha). I loved the girl I met when  I was 16, and I love even more the woman she’s become. Happy birthday, baby.

My newest tattoo to match Rachel's transplant scar. 

On a different note, there is a Cystic Fibrosis Foundation fundraiser coming up that I’m a part of. No, I’m not sprinting up a staircase or running with a straw in my mouth of anything…I’m actually not even in the event. It’s one of my clients, David Zepp who will be taking part in a 65 mile bike ride across Frederick to raise money for the CFF. Dave has lost over 48 pounds since December and continues to impress me with his progress in his sessions with me. When he’s not training in the gym with me, he’s riding his bike to stay in shape while gearing up for this event. His fundraising campaign is just like mine was for the stair climb. He has a personal page on the CFF site where people can donate online to help him reach his goal. Here’s the link: www.cff.org/LWC/DavidZepp

With how busy I am at work, I’m not able to do the ride with Dave, so I’m asking for donations on behalf of Rachel to go to Dave’s campaign. Rachel’s transplant didn’t cure her CF, and there are thousands of other people who suffer from CF that need your support to find new drugs, therapies, and fund research that could ultimately find a cure for CF.

Oh, and one more thing I just remembered that makes the Rachel of this year amazing…she can work out now! Haha, I know it sounds weird, but it really is awesome to see her able to exercise now that she has the breath to do so. The other day she asked me to make a workout for her and I could have cried. Ok, not really…I’m not that ridiculous (although Rachel would probably argue otherwise), but it really is incredible, the kind of healing God has brought to us. She still has her bad days with pain from the surgery and reactions to medicines, but I’m pretty sure that this birthday is gonna be 100 times better than last year thanks to Him. 

The Last 2 Months

Has it really been 2 months since I posted last? Wow. I guess that is what happens when you start to get better. I will do my best to tell you what has been going on, and I’ll try not to make it too long!

June was an interesting month. My sister and her husband planned to come down from Boston for the week before Father’s Day. I was so excited to see her! She had surprised us a month or two before with a visit, but I was still in the early stages of recovery and didn’t have a whole lot of energy for hanging out. Mary and Peter got in late on the 13th and the 7 of us (including Blizzie, of course) had a great dinner together the next night. I had bloodwork the following morning and that evening my coordinator called…my kidney levels were up high again and she wanted me to come down in the morning. And she told me to expect to stay. So, Mom and I packed bags and headed to Baltimore the next morning. After waiting all day (and that is not an exaggeration) they had a bed for me. They gave me fluids over night and my kidney levels jumped right back to normal…but they had done a blood culture and it showed that I had an infection. My doctors felt like it would be a good time to remove my picc line, even if that wasn’t the cause and so they took it out. They found that my picc was infected (although it showed no signs at all) and the infection had gone into my blood. What they told me would be a 2-3 day stay turned into a 7 day stay. I still needed IV antibiotics after the picc was removed to treat the blood infection. And because I have tiny veins that have been stuck a lot in the past few months, each IV they put in only lasted a day or so. At the end of my stay, I had gone through 5 peripheral IVs and went home with one. I’m not going to say that this was just another hospital stay…one of those “bumps in the road” as the transplant team calls it. This was a hard one. Really hard. I went in for one problem and found out I had a much more serious problem that we didn’t even know about. Everyone was saying how good it was that I had come in before I got really sick…but I was having trouble seeing it that way. I just wanted one piece of my body to work. I honestly couldn’t think of a single thing that had not been affected by the transplant. It didn’t help that the interns and floor doctors were not the most pleasant and compassionate I’d ever met. It just wasn’t the greatest of weeks at Johns Hopkins.

I had really been struggling with all the smaller issues I don’t really talk about… It just really confused me. I can understand the lung transplant and how God could use that to encourage people through our situation…but how is it helping anyone if I have to get stuck 3 times just to get an IV started, only to have it go bad and need a new one the next morning? It wasn’t until I was home that God helped me understand why there are those difficult times that no one knows about. I know that things are not about me or having a perfect little life…that much is obvious. But it isn’t even about the people we encourage through our situations. This is all about God. And at those times when I feel like no one could ever understand what I’m feeling, when no one can know how much it hurts, when I’m home alone and all I can think of are problems…those are the times for God to be encouraged…and only Him. So, when those times come up, I’m trying to do my best. My very dear cousin has told me before that I’m a “Rock Star”. I want to be a rock star even when no one is there. When everything is wrong and no one knows it, God does and I think it encourages Him and gives Him glory when I face the challenges and don’t let them get the best of me, even when no one sees. So that is what I’m going for. And Nicole, I love you and I think you are a Rock Star, too.

So that was basically June. Mary and Peter had to leave before I was out of the hospital. Mom sacrificed a lot of time with Mary to stay in that dumb hospital room with me…and I am so thankful. I went home and finished up 7 days of IV antibiotics and then I was free! I had an IV from February 25th – June 28th. I finally felt like things could get a little more normal. And they did. I went back for a follow up after my hospital stay and at the end of the visit my doctor looked at me and said, “3-4 weeks then.” I said, “3-4 weeks, what?” He said, “We’ll see you back in 3-4 weeks.” Mom and I were silent for a few seconds. Then I got big tears in my eyes and told him how happy I was! It turned out they didn’t have any open appointments for 5 weeks, so they said that would be just fine. I’ve been down to Baltimore several times for bloodwork, but not for an appointment! I’m supposed to go back on August 3rd. It feels like forever!

July has been good. Jonathan and I celebrated our 1 year anniversary on the 10th. It was so happy and very emotional for me. This isn’t what we expected. It made me sad in a way because I know we didn’t get to have that “newly wed” feeling for long…only a month before all of this started. We have already had to face a situation that we honestly didn’t know I would live through. I will never forget telling him I love him and having to let go of his hand as they took me back for surgery. That is the hardest thing I have ever done. And I thought of how much he had to care for me when I came home. He did everything for me even after working all day long. And things still are not easy. But God has pulled us together in a way that I can’t describe. And I wouldn’t trade this year for anything with anyone else. It was also happy because it was like we were starting everything new. I’m feeling so much better and can go and do things. I’m not expecting year number 2 to be a walk in the park (although I can walk in the park if I want to, thanks to my lungs!) but I know for sure it will be new and different and beautiful!

In other news, there are 2 new members of the little Slick family! Hermit Crabs! Irwin and Woody have been living with us for about 3 weeks and we just love them! We got Irwin in Chincoteague on our weekend trip for our anniversary. The store gave us a paper about hermit crabs and I read it on the way home. I discovered that hermit crabs don’t like to live alone…so Jonathan said we could get Irwin a brother. They didn’t get along very well at first, but now they are pals. At least I think they are. Jonathan wondered how I could tell that Irwin was lonely in the first place. But I could…I guess my sensitivity to pet emotions is just a bit higher than his! Anyway, they are just so great and I love them!

July 26th was the 5 month mark since my surgery. Thank you, God. You are so good to me.

- Rachel

Eating our 1 year old wedding cake on our anniversary...
don't know why it's a tradition to eat cake that's been around for so long...
but hey, it's cake!

Eating at our FAVORITE place on the island...Woody's BBQ!!!

Jonny setting up the umbrella. What a cutie :)

The bag Brian sent us home from the hospital with completely full of medicines,
has now become our beach bag...much better this way!

Admitted

Last Wednesday Rachel's doctors told her that they wanted to see her, as her creatinine (kidney) level was elevated. She came down to Hopkins on Thursday and was asked to stay in the hospital since her immunospressant  level was also high and they needed to monitor her while both numbers go down. While I was at work, her mom drove her down at 11am and waited until they got a room around 5pm.

The next day, her kidney levels went back to almost normal and her doctors said that they'd like to send her home on Saturday. It sounded too good to be true, because it was. I drove down after I got off work on Friday and soon after I arrived, two doctors came in to tells us that a blood culture that was taken from Rachel's PICC line (IV line in her arm) was growing bacteria. This either meant that her line was infected, or her blood was infected. Either way, it was going t mean more IV's. Rachel was set to be completely off IV's and have the line removed the first week of July, but it could be longer before we get to have that. The reason she got the transplant was to avoid hospital stays, and to be off constant IV's, but it seems like since the surgery, she's been in the hospital more, and on IV's for the past 4 straight months...

Anyway, they drew blood from her arm (not her PICC) to see if her blood was infected and we waited for the results. I drove home late Friday night and came back down yesterday afternoon. Rachel's mom, Karen had already left and Rachel was lying on the bed when I walked in. She didn't look happy and I asked what was wrong. "My blood's infected," she replied. We still don't know exactly what kind of bacteria it is yet, but we're treating it with IV meds through a peripheral line, as her PICC has been removed (that's where the infection originated). We're praying that the meds kill the bacteria quickly so she won't have to have another PICC line place and be on IV's for an extensive period of time at home.
The strangest thing about all of this, is that she felt fine before she came down here for the high kidney levels, and she feels fine now with a blood infection! It's probably a mix of her toughness and the massive amounts of medications she has be to be on that is masking the symptoms of a blood infection. Still though, she has no fever, chills, night sweats, or other signs of an infection so I'm hoping that it's because the infection is minor...

Watching someone you love go through something like this and going through it with them is heartbreaking, but I was encouraged by two of my old friends yesterday. The first was Tom, a guy I worked with at my first job at Chick-fil-A when I was in high school. We were talking about how God has changed us both for the better since the days when we worked together. While talking to him about our current situation, I told him what I tell Rachel all the time: God only gave us our struggles because He knows we can handle it with His help. If God thinks we're tough enough to deal with everything, I'd say that's a pretty good compliment.
After seeing Tom, I went out to lunch with one of my best friends, Jonathan, who was with me during Rachel's surgery. We were talking about the trials that we've both been through and how God's worked things out. I always worry about how we're going to handle things financially on top of everything else, and Jonathan has had his own similar struggles.His thoughts were, "It all works out in the end. We're never sure how, but it always does," and I couldn't agree more. We live in an instant world. Everything is at our fingertips and we want everything fast and easy. It takes a good earth-shattering, "wake up and realize you're not in control," moment to really get us to trust God sometimes.

So here we are, sitting in a Hopkins room again, waiting for the results of the bacteria test to know what to do next. And this is exactly where we're supposed to be right now. I'm not sure why, but I am confident that this is what God had in store for us both since the beginning of the world. Rachel and I were made for each other, and made for the life we are living.

Please pray that the bacteria in Rachel's blood disappears, that she won't have to be on a long dose of IV's, and that she can come home soon. Also pray for strength for the both of us.

P.S. On a lighter, happier note: I'm now a full time employee at the YMCA! And the best part about it? Health insurance for my Rachel!