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!

Bronch Results, Fun Stuff, and lots of Pictures!!!

Terri (my coordinator) called me on Thursday to give me the results of my bronch…NO REJECTION!!! She said everything looks great in there and that my body is accepting my lungs! How amazing! One of my dear little friends prayed for me when she first heard that I was having my surgery. She prayed, “Please help Miss Rachel’s body to be like the lobby of a hotel…that her lungs would just feel welcomed and safe and want to stay there!” As funny as it sounds, it makes complete sense! And I am so thankful that she prayed those special words…because that is exactly how my lungs are feeling!

We are still waiting to hear the results of the tissue samples they took, but hopefully there will be no signs of infection! I was able to go down on the amount of steroids I’m on! The lowest I’ve been in years and years! I also went up on my lasix so my feet have been less puffy for the past few days.

And now for the fun things we have been able to do! Last Sunday we did our normal Sunday routine. Unfortunately, returning to church on Sundays has been very difficult. Mornings are still very hard for me. I have nausea from the IV antibiotic I’m on and my pain is always the worst when I get up. I normally have to spend about an hour on the couch after taking my medicines before I start to feel better. So anyways, we went over to the Slick’s house for lunch, then went to my parent’s house for dinner. After we ate, we put Blizzie on her leash and the 5 of us headed over to the playground at the elementary school just outside of the neighborhood. It felt so good to walk and laugh and just not think about anything except being alive at that moment. It was one of those special times that I won’t soon forget. It was a good TV week too…Biggest Loser and American Idol finales! On Saturday we went up to Deep Creek Lake with two of our good friend who have a house and an amazing boat there. It was so relaxing to go flying across the lake sitting beside the man who has stuck by my side through such difficult times. The weather was beautiful. After so much rain and being inside the house so much, it was so refreshing to be outside in the sun. Yesterday we went to the Slick’s for a cook out with Jonathan’s immediate family and a few aunts and his grandmother. Again, it was so nice to be outside! After dinner, my dear friend Rosemary and her super great boyfriend, Justin, came over to our apartment for the first time! We showed them around, laughed, snacked, and talked. Rosemary and I have been best friends since I was 4 and she was 3. Although we live 3 hours away now and don’t get to see each other much, when we do get together it seems like we were never apart. And Justin is just so great! He gets my approval for sure!

Jonathan is at work this morning for a few hours. This afternoon we plan to go over to my parent’s and hang out there for the day! And I think I’ll have some extra time to work on some artwork! So very thankful for this day.

- Rachel

My pill box...I take over 455 pills a week! Crazy!

16 of my morning pills!

Mom and I at the playground...Mom's head isn't on backwards...
just the sweatshirt is!

My favorite monkey.

Daddy and Blizzie...she isn't really a big fan of tunnels.

Swinging!

The 5 of us <3

My second try at roasting chicken...right side up this time!

The month of May

*I wrote this on Wednesday, May 26th so if I refer to yesterday, I really mean Tuesday!*

I haven’t done a very good job of updating the blog recently…I’m sorry. Things have been so crazy! I feel like I’m always saying that ; ) It is true though. The past month has been such a roller coaster; and for the first time in a very, very long time, I think I can say that there have been more ups than downs!

Shortly after my last post I was told that I could start going down to Baltimore every 2 weeks…but that didn’t happen right away. I started having kidney stone issues (which I’ve dealt with before) then it was blood pressure problems and then prograf (anti-rejection medicine) levels…I was texting my sister one day and said, “I’d be totally happy if just 1 of my parts worked.” Thankfully, things have settled down. I just went for my first 2 week stretch without going to Hopkins! Not even for blood work! 14 days of no doctors might not seem like much. Trust me, it is! I finally felt a little tiny bit normal. I really started cooking again and trying to keep our apartment clean (with lots of help from Mom.) We’ve been able to see more friends and go places! It’s been amazing. And I’ve been feeling like I’m finally making progress. The other day I was on the phone with my coordinator Terri and I was upset because I’m about to start my 4th straight month of being on IV’s. I apologized and she said to me, “Rachel, don’t say you’re sorry. This is a lot to handle. Just try to think of all the progress you’ve made.” And she is so right. That morning I had been on my hands and knees scrubbing the bathroom floor. The day before I had dragged a coffee table out of a closet and did a little living-room re-arranging. And for crying out loud, it had be 14 whole days since I’d seen them!!! Praise God from whom all blessings flow…even the ones that most people don’t count as blessings…I’ve learned to count every little thing.

Today is exactly 3 months. I can’t believe it. This morning I just thanked God to be on this side. The past 3 months have been so hard…harder than I can say. The months before were so hard too. I think it is good sometimes that God doesn’t let us know what we are going to have to face when we know He is leading us somewhere. I was just talking about that yesterday with one of my good friends in Baltimore. She is facing some mountains of her own and I am so thankful that God has blessed me with her friendship through all of this.

So I did go back yesterday for a check up. PFT’s have come down 8% in the past 2 weeks and my feet are puffy again. I had my 3 month bronch today so we should be able to find out what is going on. Either a little rejection or it could be the fluid that I still have under my lungs. I’ll probably have to get that tapped again…not looking forward to that, but we’ll deal with it as it comes. Dr. Orens is on vacation for 2 weeks so I couldn’t see him yesterday…I guess when you spend each day caring for people that have other people’s lungs in their bodies, you need a break every now and then. Instead I saw a doctor that I had never met before. He is leaving Hopkins to become the head of lung transplant research at another hospital. He also did my bronch today. The procedure went very well. All of the nurses in that department are so nice and want you to be as comfortable as possible. They let me stick my ipod in the bag with my shoes so that when I came out I could listen to my music instead of hearing other people throw up and talk about the colonoscopy they are about to have…not pleasant when you haven’t eaten all day and are nauseous and trying to wake up! But all of that was avoided and I was able to lay in my bed listening to some of my favorites until Mom was allowed back. After they finally processed my paperwork (which took 1 hour and 45 minutes from the time I woke up…sheesh) we headed down to the cafeteria. As we walked through we saw Dr. McDyer, the doctor that had just done my bronch. Mom and I waved and went to get our food. We thought it was so funny that just 2 hours before that man had a tube down my throat, looking at my lungs with a tiny camera, washing them out, and collecting tissue samples. Now he was just sitting there eating tacos with one of his friends. It made me laugh when I thought of the phone call Dr. Shaw (my surgeon) might have made on the morning of February 26th… “Oh, hi honey! Yeah, I’m at work about to put someone else’s lungs into this Slick girl. By the way, what’s for dinner?” I can’t imagine what their lives must be like! How thankful I am that God has made them to think and live that way.

Thank you for all of your prayers! I will let you know the results of my bronch when I get them.

- Rachel

"Phenomenal!"

Today marks the last day of my weekly post-transplant appointments! For the next month or two I will go down every two weeks…yay! I guess that means I’m getting better : ) We found out that I can have blood work done locally and my doctors will still get my numbers fairly quickly, so that cuts down of driving too! I will, however, be starting pulmonary rehab in Frederick (they don’t have a program in Hagerstown) and that will be 3 days a week…woo hoo for driving…just kidding. Thankfully, Mom has been so willing and patient and flexible that she has taken me to all my appointments and will take me to rehab. She is just great!

Any ways, we went back down to Hopkins today. Had blood work, x-ray, PFT’s, then saw Dr. Orens and my coordinator Terri. The blood work showed that my kidney function is back up again…in a bad way. So, we are shuffling around some medicines and waiting for my anti-rejection drug number to come back, as that is probably the problem. My x-ray looked really good! I am so thankful that the fluid seems to be coming down out of the right side and I don’t have to have it drained!!! I was really not looking forward to that. Then I did my PFT’s…and let me tell you, I’ve never had so much fun doing a lung function test!!! My friend Paula (who always does my tests) made sure that she printed out 3 copies of the test results…1 for Dr. Orens, 1 for Mom’s refrigerator, and 1 for our refrigerator…because they were SO AWESOME!!!!!!!!!! I beat my own personal record!!!!!!!!!! My FEV1 was 2.54 and that means 84%!!!!!!!!!!!!!!!!!! Dr. Orens said that my home PFT’s and my in-clinic PFT’s were, and I quote, “Phenomenal!” I never even dreamed that a doctor would tell me that my lungs were in awesome shape and that my numbers were phenomenal. God, I love these lungs. I love them and I thank you for them. They are beautiful.

My lungs may be doing great, but there are still a few things that just are a little out of control. My blood sugar, for example, is just unexplainable. I treat each meal and snack with insulin, and do a long-lasting insulin shot everyday, and still they don’t make any sense. Dr. Orens said I have a rare condition called GOK. We asked him what that was. He said that GOK means “God Only Knows!” We all laughed : ) If there is anyone who knows, I’m glad it is Him! There have been so many times when doctors have told me that they have no idea what is going on with my body. I’ve had so many tests to try to figure things out. But in the end, we know that God knows. And it is my God, who created this amazing world, who holds everything together, who created my body, and who created my old and my new lungs, it is Him who knows what is going on. And I trust Him. God, I love you…a lot.

In other good news, I can now chase Jonathan. Yes, it is true! He may still be stronger than me and bigger than me, but when he made some dumb joke tonight I chased him down the hall and caught him!!! That is right, Mr. Slick, you can’t get away any more : )

- Rachel

Drum roll, please!!!

I just have to say this so that everyone knows, again, how amazing our God is. Just a few minutes ago I was going through my night-time routine of checking my temperature, blood pressure, taking my medicines, and doing my PFT’s. I mentioned in my last blog that my PFT’s are jumping up everyday…and tonight was no exception! My number tonight was 2.44!!!!! That means that I have a lung function of 79%!!!!! I can’t stop the tears that keep coming. I keep thinking of a song from a few years ago, “Every blessing You pour out I’ll turn back to praise! When the darkness closes in, Lord, still I will say, ‘Blessed be the name of the Lord! Blessed be Your name!’” I will be totally honest and say that these days have been so hard. I’ve been in pain, discomfort, frustrated, discouraged, tired, annoyed, lonely, and concerned. But God always knows when I need something to pull me back up and give me hope. Today He blessed me over and over with those little pick-me-ups. I spend the morning with my amazing husband and all we did was relax and enjoy each others company. Then we spent the afternoon and evening with my Mom and Dad…and the trip out for mint chocolate chip ice cream was great too! And then tonight doing my PFT’s and seeing such a great number…what an incredible blessing it is to have this gift of a new life with new, amazing lungs and to see after weeks of feeling not so great, to see in numbers that show how great it really is…I wish each one of you could know what this is like. Thank You, God : )

- Rachel

How to Recover From a Lung Transplant

You may think that recovering from a double lung transplant would be long and boring…well, you’ve got the long part right for sure, but it is far from boring.

Last time I wrote my lung function had been dropping, I was out of breath, and was getting discouraged. I wrote that Mom would be taking me down to Hopkins bright and early the next day for an x-ray and PFT’s. It turned out that our day was just a bit more eventful. We arrived, had my x-ray done, did my PFT’s (which were down to 44%), and sat in the waiting room when I got a call from Dr. Orens. He said that he had looked at my x-ray and saw that I still had a LOT of fluid left around my lungs and that was why my PFT’s were low and I had been so short of breath. He told me to go to one of the other buildings and that one of the doctors would do a sonogram on my back to determine which side had more fluid around it, numb the spot, insert a needle and extract as much fluid as possible out of the one side. Dr. Orens promised it wouldn’t hurt…so I shrugged my shoulders and said, “Well, if you promise it won’t hurt, I’ll do it.” So, Mom and I headed over to Blalock 4…and they did exactly what Dr. Orens said they would do. It wasn’t exactly painless…but it was ok. After about 20 minutes of sitting there with a needle in my back having fluid sucked out of me, (sorry for being so graphic, but it was kind of a traumatizing experience!) they decided they had gotten about as much out as they could…more that 1.5 liters off of the left side alone! Can you believe that?! And I still have almost as much left of my right side! No wonder I couldn’t breathe very well. There was over 3 liters of fluid taking up the space that my new lungs should have been taking.

After the fluid-draining experience, we headed over to see Dr. Orens in clinic. He told me that in just a few days I would feel like a new person. He said that my left lung would now have room to expand and that my lung function would go up and it would be great! Then he looked at my incision site and decided that it was the perfect time to take out all of my staples! I kind of freaked out for a second. Once again, he promised that it wouldn’t hurt. And once again, I shrugged my shoulders and said, “Well, if you promise it won’t hurt, I’ll do it.” So, he set to work taking out the staples…all 100 and some. Then it was time to take out the sutures from all 6 chest tubes I had after the surgery. 4 of them came out relatively easily, 2 of them required numbing and a little extra maneuvering…but I won’t go into detail :P

By the end of the day I was exhausted. We got so much accomplished, but it was not the most fun day of events. We had a free day on Wednesday and went back down for blood work on Thursday. Over the weekend was really fun…and difficult at the same time. I wasn’t feeling well and as my lung was expanding it was rubbing inside and was quite painful. The fun part was that I could breathe so much better! The Monday that I wrote the last blog my home PFT number was 1.23 and two days later it was up to 1.50! Since then it has jumped up and up and up! This week I’ve been doing my PFT’s and bursting into tears because I’m so excited at how God is making my new lungs work so well! Tonight I reached a new record for my PFT’s… the number that had been 1.23 just last week is now up to 2.38!!! That works out to be 77% lung function!!!!! And my lungs feel that good too. I just can’t even describe how this feels…or how amazed I am at our incredible God.

This week we went down on Monday for blood work and Dr. Orens saw me quickly since he had to go out west for a transplant conference this week. He started me on a bata blocker since my blood pressure has been high for the past few weeks. Unfortunately, I’ve been having some very uncomfortable side effects…but I’m not going to complain. Tuesday we had a day off and spent it at my parent’s house with our sweet little doggie, Blizzie. I also got to visit with my dear friend, April. She always makes me laugh and I love her so very much! Wednesday was another clinic visit. We were there almost all day doing PFT’s, blood work, x-rays, and my visit with my coordinators. I had another great break through that day…I managed the whole day at Hopkins without needing a wheel chair!!! It was all my new lungs doing the work to get this tired, little, worn out body around!

Mom was saying today that it is kind of like we are on vacation for a little while…we have 5 days when we don’t have to go down to Baltimore! What to do with all the free time? Thankfully I am able to get out of the house and shop and go places! I can’t handle much, but it is nice to get out! It is a good thing too because Jonathan’s birthday is a week from Monday! He has the whole day off and I’m so happy that his 22^nd birthday will include me, his wife that can breathe!

My next appointment is on Tuesday. I’ll have another x-ray to determine if I need to have the fluid drained out of my right side this week. God has really answered our prayers in terms of losing fluid. After the surgery I gained at least 28 pounds…all in fluid. 7 weeks later I have lost almost all of it. There is still some that just doesn’t want to give up its spot in my feet (so I have to wear my trusty pair of Mucluk slippers everywhere…can’t fit into anything else!), and like I said earlier, there is still some in the right side of my chest. We are continuing to pray that that will all be gone soon and that I will have my old body back…well, a better version of my old body!

Thank you for reading and for continuing to lift us up to our Creator. He is so good and each day we see the miracles He is doing…even when they are surrounded by challenges and difficulties and discomfort.

I can do all things through Christ who gives me strength.

- Rachel

P.S. Here is a link to the Johns Hopkins Transplant Center Facebook page...you can find out all about this incredible program and see pictures of the amazing people that God has used to change the lives of so many people! 

Johns Hopkins Transplant Center

"Charm" City

“Charm City” as Baltimore is so often referred to has become, well, not so charming these days. I was able to come home last Friday after 10 days in the hospital. Dr. Orens came into my room on Wednesday and said that he really wanted to watch me closely and have me stay until Monday. I had no control over the tears that quickly formed and ran down my cheeks. When he saw those tears he changed his mind and said that he didn’t want to make me cry and that Friday would be just fine! Then we joked that tears were my plan and if that didn’t work, Mom was going to start crying too! Dr. Orens said that now I know his weakness…just a few tears will do the trick!

It has been so good to be home. I can rest when I need to and walk and do easy house work…and I get to be with my husband. It has also been very hard. Even though my bronchocosopy results came back normal with no signs of rejection, I’ve been feeling out of breath and my PFT numbers have dropped. Today I was really concerned about them. I talked to my coordinator, Brian, and he talked to Dr. Orens. They wanted me to come to Hopkins today and have an x-ray and more accurate PFT’s done, but by the time we would have gotten down there, the PFT lab would have been closed and there would be no point. Brian set us up for both test tomorrow morning…he tried so hard to get us in! Unfortunately, the only time they had available for PFT’s is 8:15 AM. So, we’ll be leaving Hagerstown at 6:30 tomorrow morning…prayers would be great.

As I mentioned before, Baltimore is not so charming any more. This morning we made the hour and a half trip to do blood work. We couldn’t do it locally because it takes local labs 4-5 days to get the results from one of my anti-rejection drugs. That is just too long. It wasn’t a bad trip at all though! I slept both ways. Mom does such an amazing job driving back and forth so often…especially with me sound asleep the whole way! And the phlebotomist was able to draw blood on her first try! That is not easy with my skinny, little veins! Thankfully, all of my numbers looked good!

To be honest with you, my body has been struggling, but so has my heart. The mornings are so hard…my body just doesn’t want to move, my lungs take time to wake up, and my swelling is still so uncomfortable. During the day time I’m ok…just naps and walks and getting little things done here and there. At night I have to sleep on the couch and try to get as comfortable as possible. With all of those inconvenient things and my PFT’s dropping, I must say that sometimes it is so hard to hang on and remember that it will not always be this way. This morning as I ate my Cheerios, I read Psalm 46. It has always been my favorite. The writer is saying all that God is capable of…and yet God’s words to us are “Be still and know that I am God.” And we are trying to do just that. Instead of over thinking things and getting worried, we are going to take things one hour at a time…and if that is too much, we’ll just take each minute as it comes. So, as we wait for the day when I can breathe, we know how to take care of these wonderful new lungs, and we live our version of “normal” I pray that God will remind us of what he has promised…He will never leave me, I am fearfully and wonderfully made, I can do all things through Christ.

- Rachel

A little collage I did in the hospital : )

Sunday and Monday at Hopkins : )

I am so thankful for such a quiet day yesterday. Only a few doctors and no tests other than blood work! After 3 diet changes, I could finally relax a little on what I was eating. I had to really watch how much potassium, phosphorous, and sodium I was taking in. All of those levels had been pretty high. But Mom and I decided to take a break from the hospital tray and have a little Sunday morning breakfast date down stairs. We got some egg, sausage, and cheese biscuits (cheating  just a little on what I was supposed to be avoiding) and ate those yummy things. Daddy came down and the three of us enjoyed some time walking the halls and watching TV.

I couldn’t eat after midnight because we weren’t sure if I was going to have a bronchoscopy today. It had been scheduled a few weeks ago before we knew I would be in the hospital. Thankfully, my doctors said it was still a go! It was so good to be able to do it while I’m here and not have to make a special trip for it. I always have such a hard time when I don’t get to eat. I was so glad it was scheduled for 10 in the morning and not some time in the afternoon! Instead of just sliding a tube down my throat (I am completely asleep for this) and taking a look with a little camera, they were also going to use saline to flush out any secretions that might be there, as well as take a biopsy of my lungs to make sure they are doing well. They told me to expect to be uncomfortable for a while after…lots of coughing, sore throat, sleepiness, nausea. I felt all of those symptoms, but just a tiny bit! It really wasn’t bad at all! Within 2 hours we were down in the cafeteria and I was eating cheese fries (cheating again…oops!) a salad, and of course, Mountain Dew. My doctors came in later and said that everything looked very normal for 1 month out and that we would have some results in the next 24-48 hours. Another great thing is that my lungs feel even clearer than they did before! I walked 40 minutes again today! Thank you, God…this is really, truly, great.

Jonathan just left a little while ago. He came here straight from work. I can’t wait to be home and be able to really be his wife again. For so many weeks I haven’t been able to do even the small things that help him out…chopping veggies, putting clothes away, cooking dinner…all the things that I have mentioned before that I love to do. It is so exciting to think about getting back into the swing of things…and then I remember that it will be even better than before! I have new lungs! When I vacuum I will be able to breathe at the same time! When we get groceries, I’ll be able to help bring them upstairs! I’ll have more energy to make dinner and bake and try out new recipes! I know I still have weeks of recovery to go, but God is getting me so excited for the gifts that I just know He will bring me! And until those great days ahead, we’ll just keep pushing on…

For nothing will be impossible with God. Luke 1:37

- Rachel

Chicken, Quinoa, and Kale...can't wait to get cooking again!

Tilapia, Pasta, Sauce, and Broccoli...
Jonny always makes the pasta sauce and it is delicious!

Another Day at Hopkins

I’m just sitting in the hospital room with Mom right now. She is sleeping on my bed and I’m just sitting in a chair with my feet propped up on another chair, piled with pillows to keep my feet elevated. Jonathan was able to spend the night here last night. It was so amazing to see him and hold his hand and laugh with him. Talking on the phone and texting is great, but there is nothing like a hug. He makes me so happy, I can’t even say how much!

Anyway, we are just sitting here. We have to pay for TV and only get about 30 channels…no HGTV and Food Network cuts out every 2 seconds…can you believe that?! Aarrrggg! Ok, I know that is a stupid thing to complain about, but when you are in the hospital, there isn’t really a lot to do. It has given me some reading time that I have missed so much in daily life.

The extra time has also given me more motivation to get out and walk. When I first had my surgery, I was restricted to the floor I was on. This time, I’m not attached to any tubes or IV’s, so I’m free to go down stairs and walk throughout the buildings. Tonight, Mom and I walked for 15 minutes and Jonathan and I walked for 15 minutes earlier today! I told Mom that there was no way I would have been able to do that before the surgery. Here we are, exactly 4 weeks later and I’m walking for 30 minutes a day! How great is our God that He can make our bodies work like that?! Every time I think about having someone else’s lungs inside of me, I am just speechless. It helps me to remember that even MY body must be fearfully and wonderfully made just like Psalm 139 says. I’ve always found that a hard verse to believe myself. But now, I know it to be true. Even though other parts of my body (like my kidneys) are having trouble right now, we are seeing miracles there too. My kidney level was pretty much the same today…hopefully they will start to go down, but at least they are holding their own! And we didn’t have to do dialysis today! Thank you, God!

Mary and Peter drove into town on Wednesday night. Sadly, we will not get to see each other. Things worked out so great with Jonathan spending the night and Mom going home. At least Mom was able to have dinner with Dad, Mary, and Peter and then spend some time with Mary last night. My Mom and my sister are great. They were both willing to sacrifice their time together for me. What incredible support I have from my whole family. I am so very thankful.

Today was pretty quiet in terms of doctors and tests and results. I think tomorrow will be similar. That is what I’m hoping for at least! Thank you for reading our blog and for keeping us in your prayers. It is like a big, warm hug to know that so many people, even people we’ve never met, love us and lift us up to our amazing God.

- Rachel

Just looking through our honeymoon pictures and found this one!

Pajama Party

I had almost finished a post last week about my appointments but I was never able to complete and upload it…so, I’ll give you a short update on last week and then tell you about this week!

Last Tuesday at Hopkins, I was scheduled for a chest x-ray, pulmonary function tests (PFT’s), and to see the transplant team. The x-ray showed that I still have some fluid in my lungs, but it was nothing to worry about and my home PFT numbers as well as my clinical PFT numbers looked great! I was still swollen, but the transplant team was confident that it would just take time to get the extra water off after surgery. Dr. Orens even said that my lungs are doing “awesome!” Thank you, God, for my awesome lungs!!!

On Thursday I was scheduled to meet with a diabetes nurse practitioner and I needed to have my picc line fixed or replaced. The diabetes appointment went quickly and easily. Since the surgery, my blood sugars have been much more manageable. She said that I was doing a good job and that my numbers were great! We then headed up to get my picc line situation figured out. They had prepped me, had me in an O.R., had everything sterile, and then realized that both sides of my picc line were working! It was crazy! So, they flushed each line and sent me home! What an incredible blessing that was! Thank you, God, for great blood sugar numbers and for fixing my picc line!

Then we get to the weekend…it was not so pleasant. Each morning I realized that I was gaining at least 2 lbs. and instead of getting smaller and less swollen, I was starting to feel like my skin would burst because of all the extra water. My PFT’s were also slowly creeping down. That is what worried me the most. It felt like every moment was a battle to keep from freaking out. If something was wrong with my new lungs…that was the worst thing I could think of. Jonathan was so patient with me. Even though I would randomly burst into tears, he would just hold me as best he could (without hurting my staples) and he would tell me that we would get everything figured out and that I looked more beautiful than ever. I am married to an amazing man.

I called the transplant coordinator on-call on Sunday. I explained everything and she said that she and Dr. Orens were confident that the swelling and my drop in PFT’s were due to the excess fluid. She said we would do blood work the next day, and that I was already scheduled to go to clinic on Tuesday. God gave me peace with that knowledge and even though Sunday and Monday were two of the most uncomfortable days of my life, He got me through them.

Tuesday morning came and I had slept the whole night on the sofa to find a sleeping position that was comfortable. Jonathan let me sleep in and got ready for work like usual…except we both had a feeling that they would want to admit me to the hospital and we might not have another morning together for a while. Then Jonathan headed off to work. Mom arrived and she packed a bag for me with clothes and toiletries to last me a few days. She already had one packed in the car for her. It was quite a relief when Dr. Orens asked me if I packed my pajamas because I was going to a sleep-over in the hospital. We all knew I just need to get better… that was not happening at home even though I was doing everything I possibly could to help my body along. Dr. Orens decided to stop all of my IV antibiotics because they can be harmful to kidneys. After waiting for about 5 hours in the admissions office, a room opened up and by 11:30 on Tuesday night we were finally settled in. It was a tiny room…very tiny. No shower.

Early Wednesday morning, they came to take me to get sonograms of my kidneys and my legs. The rest of the day was filled with lots of pain and discomfort (I don’t mean to complain, it was just very unpleasant), doctors telling us what might be going on, and blood work. The kidney team started using the word “dialysis” which kind of freaked me out. They said if my kidney function levels didn’t get better, that dialysis would be a last resort treatment to get the water off and help my kidneys kick back in gear. But first we needed to wait and see what my body would do for itself. Jonathan came down after work and spent several hours with Mom and I. What an incredible guy! He drove through a thunderstorm to get home, then had to pack everything up for the next day. He has made so many sacrifices for me…I can’t understand why, but I am so very thankful.

Thursday was very encouraging! We found out that one of my anti-rejection medication levels was way too high. My blood work results from Monday had not been sent and my doctors were told that a set of previous levels were Monday’s levels…so they were kind of shocked when my levels had supposedly jumped from 4 to 35 in just three days. After lunch, Dr. Orens came into my room and said that they were looking at the wrong numbers and just then had gotten the real levels from Monday. It was really 20. Everyone couldn’t believe that with numbers like that, my kidneys were still working at all! Another reminder that God is doing miracles around here!

Today was encouraging too! Since the news about my anti-rejection levels, the kidney team, as well as the transplant team, feels sure that there was no permanent damage to my kidneys. My kidney function numbers have leveled off…at least they aren’t getting worse! My potassium level (which I was having trouble with as well) has gone down into a normal range, and my swelling even seems a little tiny bit better! I walked for 40 minutes and even had a dinner date with Jonathan in the cafeteria! He is spending the night with me and then will switch off with Mom tomorrow afternoon.

These past few days have been so difficult. After all we went through with the surgery, I was so excited to jump into our new life with new lungs. We’ve been told that the first year is full of bumps and obstacles that we would have to make it through. I had prepared myself for challenges, I just wasn’t expecting them so soon. God has been showing His faithfulness everyday though. We have had great nurses and doctors, I’ve been able to spend some amazing time with my mom, and once again I am learning to treasure the tiny, special things that God gives me...holding hands and taking walks with Jonathan in the hospital hall ways, watching tv with my Daddy, laughing and crying with my mom, having yummy snacks, texting my dear friends who love and encourage me, having time to read…all beautiful things that I always forget to treasure. I’m learning so much these days…but I think the most important things are that God is good, that all He does is good, and that all of these things will work out for His glory. And that is what I want.

- Rachel

My First Check-Up

Jonathan did such a great job with writing about the past few weeks of the actual transplant so I’ll just pick up from here! I am feeling great! My new lungs are wonderful and amazing and beautiful and I love them. What a treasure it is to have this gift of fresh, healthy, living lungs. What a miracle the process is. Thank you, God, for all you have done. I love you.

So far I’ve been able to take a 15 minute walk outside everyday that I’ve been home, and yesterday I did a leg workout with Jonathan! It feels so good to move around. When I walk I can talk and think about things other than if I’m going to ever be able to catch my breath. Mom said the freckles on my nose are starting to come back from being outdoors! I’ve really enjoyed each moment outside and I see how God was working out the timing to bless me even with the detail of recovering in spring time!

My pain has been controlled very well. The worst part is that I have really bad swelling in my legs and feet. The doctors said that it is normal after surgery. I’ve been keeping my feet wrapped in ace bandages when I get up and when I’m relaxing they have to be elevated and iced. My skin is so stretched…it is very uncomfortable. If it weren’t for the swelling, I’d be in great shape! The doctors said that the swelling will go down with time and soon I’ll be back to normal.

Mom has been staying with me everyday while Jonathan is at work. I cannot tell you what an incredible person my mom is. If you know her, I know you agree. She is one of the Godliest women that has ever lived. She is so humble, so genuine, so precious. I feel so blessed to have her as my mom and I am so excited to be able to spend time with her over the next month or two. Today she took me to Hopkins for my first post-transplant check up. First I had a chest x-ray, then pulmonary function tests (PFT’s), then I saw my transplant doctor and coordinator. My x-ray showed that I still have fluid in my lungs. That is normal and my doctor was not alarmed. He said that with time it will disappear and as it does my lung function will continue to improve and I will be able to breath even deeper! My PFT’s showed that my lung function number has doubled from the number I had before the transplant! Dr. Orens was very pleased and said that my lung function will continue to improve for the next 3-6 months! I was a little nervous to show “my book”…a binder where I keep the results of all of my home monitoring. Every morning I take my temperature, weight, blood pressure, and 3 sets of PFT’s (I have a mini PFT machine at home). In the evenings I do basically the same routine. I record all the results so that I can compare from day to day to determine if I’m dealing with rejection or infection or any other complications related to the transplant. So, I brought my binder and showed my coordinator for the first time. She said it looked great and that I was doing everything perfectly! She said my numbers looked good and that with time my confidence would grow! What a relief! I was so nervous that I was doing something wrong or missing something but thankfully I seem to be doing ok!

On Thursday we have to go back down to Hopkins to meet with the diabetes department and also to replace the PICC IV line that was placed when I was in the hospital. Unfortunately, one side of the IV stopped working the night we got home and although the other side is working just fine, it is not good to have something in my body that isn’t working properly. So, Thursday should be another adventure! I’ll be sure to give you an update!

When they told us that for the first year my full time job would be taking care of my self…I believed them, I just didn’t really think they meant full time. They did. Mom wrote down a schedule for me of all of the things I have to do, medicines to take, IV’s and other transplant related things. Almost every hour there is something to do. My pill box in quite impressive too! I am now on 20 medicines! It is crazy! Jonathan and Mom are doing such a great job taking care of me though. They are making sure I get all my meds and IV’s on time and they bring them to me and get me everything I need. How incredibly blessed I am to have them! And Dad takes such good care of me too! When I’m at their house he always makes a bed for me on the couch and props my feet up and gets me what ever I need!

Like I said, I’ll give you an update after Thursday’s appointments. I would appreciate prayers specifically for the PICC line placement. It can sometimes be difficult and painful…and I’m not one for pain really! Thank you again and again for all of your prayers so far! God is amazing! And He has listened. How great is that?

- Rachel

Here are a few more pictures!

Me and my new friend and transplant coordinator Brian.

Mrs. Slick and Bethany learning how to mix IVs!

The welcome home decorations from our great friends, the Showalters!

My first post-transplant artwork! A birthday present for Mr. Slick!

Home

After feeling a bit discouraged for the beginning of this week, we got the good news on Thursday morning that we were going home.

First thing in the morning Rachel got more blood drawn for tests and we met with Brian once more to go over her medications, tests, and therapies were are do take care of at home. He came in with a large canvas bag (I call it our "transplant swag bag") full of Rachel's new meds, a pulmonary function monitor, respiratory training devices, a blood pressure monitor, a thermometer, diabetes supplies...basically CVS in a tote bag. After going through everything with us he told us to get packed up since we needed to leave by 12pm to get home for Rachel's next IV dose that was being delivered at 2:30pm. We wasted no time gathering everything up and tossing it into patient "go-home" bags. There was no way we were going to wait for a doctor to come in and say "You know...maybe we should keep you another day." After saying goodbye to Brian, the other transplant doctors, and the nurses, we headed out.

We arrived home around 2pm Thursday afternoon. One of Rachel and Karen's friends had come over with her daughter and cleaned our apartment from top to bottom while we were gone. It looked like it did when I first moved into the place! They did an incredible job. And so did Rachel with our stairs! She walked up all 14 stairs to our apartment on the second floor. Before the transplant, she'd have to stop and sit on the floor directly inside the door to catch her breath from walking up them. She still had to sit after coming up on Thursday, but she wasn't out of breath. It was more the pain from her incision and the post-op swelling in her feet that held her back.

That night, rather than do our normal routine of Rachel doing her therapy vest and other medications while I pack lunch for the next day, we started our new routine. We are now doing pulmonary function tests (FVC and FEV for anyone interested), blood pressure and heart rate, temperature, taking meds, and several breathing exercises in the morning and at night. Sure we're trading one therapy routine for another, but with her old CF lungs, therapy was just to keep them from getting worse. She'd still feel crappy after doing them, but she wouldn't feel worse like she would if she skipped them. With these therapies and medications now, her lungs are improving! Her numbers go higher and higher each time she tests them, and it's only been 2 days since she started testing!

Friday, we did next to nothing. It was fantastic. In the hospital there was hardly any quiet time or down time with all of the nurses, tests, scans, therapies, IV changes, and medications. Not now though. We read, worked on our computers, called people to catch up, went for a walk, and ate a dinner together that I made. We both love cooking and it was something we talked about a ton in the hospital since (no offense to the meal prep staff at the hospital), ours is much more enjoyable. Later in the evening we did some seated leg and hip exercises to help Rachel get her strength back from laying in the hospital bed for so long. It was the first time we've "worked out" together since my sophomore year of college.

We walked even more today (Saturday) and Rachel is up and moving around the house even more than yesterday. It's impressive, yet a little scary considering exactly 2 weeks ago today she was getting these lungs sewn in her for the first time. She's such a strong woman and a hard worker that I know that she's going to continue to recover at this quick rate. In fact, she even set a couple recovery records for Hopkins lung transplant patients: Fastest to have a ventilator tube removed, fastest to move out of ICU, and tied for the fastest to be discharged. That a girl, my wife is my hero. Next thing we know we're going to have to find some space on our shelf for her race trophies to sit next to mine...

Here are some pictures of our first walk at home

With needed to rest and recover for a while, Rachel will be able to start posting blogs of her own again. I hope I've done alright keeping everyone up to date throughout all of this process. It's been a crazy ride, but we know God was with us every step, and will continue to be as we start our new life together. 

- Jonny