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 

Post Op: Days 10 and 11

It's getting really hard to keep a positive attitude right now. Of course we're ecstatic about Rachel's new lungs and about how well she's doing, but the smooth sailing we had the first week has come to a slow trudge this week...and largely to do with a medication mix up (which I won't go into).

Yesterday (Tuesday) was the day we were told were going to be headed home after being told on Monday that we'd have to wait another day. I had already started to pack up the room but after some morning labwork came back, we found out that Rachel's kidney function levels were too high because of getting too much of a certain immunosuppressant. They play around with drug levels with transplant patients all the time to figure out the right dose for them, but she got the troublesome high dose through a mix up by the person administering it. After that her potassium and sodium levels were off, and her kidney function was way too high for us to be able to go home safely. That pretty much set the mood for the rest of the day. We started hearing "Maybe tomorrow, but probably Thursday" which in medical talk means "Thursday...maybe." We are also dealing with a short time window to get out because the home care nurse can only be waiting at our house with the next dose of medicines at a certain time.

So we just hung out in the room for another day. We checked out of the hotel thinking that we were headed home, but since that wasn't the case we all had to stay at the hospital. In lieu of the hotel gym, I did a circuit workout in the fire escape stairwell that included running the stairs, and using a crossbeam to do pullups on. Rachel got her own workout in too, walking 4 different times throughout the day. Probably the most frustrating thing about being stuck here is that she feels great for the most part, it's just her levels that are off. She thinks she'd actually recovery better at home since she'd be more comfortable and be able to rest more. Her doctors think the same thing too, but they can't send her home at these levels.

In the evening we watched "The Biggest Loser." Sam slept on some benches downstairs while I slept in a chair in Rachel's room and Karen slept in an empty transport bed the nurse let us put in the room for the night.

Today (Wednesday) we woke up hopeful that we were going home, only to get handed another "maybe today, maybe tomorrow" spiel. We knew what that meant, and sure enough, we were right. Rachel's kidney levels are down a good bit, but still too high to go home today. In fact, this afternoon a transplant nurse told us that they were shooting for tomorrow, but maybe not until Friday. This is not even due to the kidney levels, but with timing issues with the dose amounts and delivery of the medications through home care. We met with a transplant doctor who went over the medications and things we needed to get ready for at home. Every time we meet with him we're so encouraged due to his positive outlook and obvious care for my wife's health. It kind of softens the blow when he says "You might be here for two more days."

This morning I workout out in the stairwell for a bit, Rachel walked, and her parents decided to go home for the night for some better sleep and to give Rachel and I a chance to be alone together for an evening. Sam and Karen have been great throughout all of this. I can't even imagine how much harder this would be for both me and Rachel if her parents weren't so helpful and easy to get along with. They'll be back early tomorrow morning to hopefully pick us up and head home. If not...it'll be yet another night in Hopkins...

Post Op: Day 8 (rough) and 9 (awesome)

Yesterday was not a great day. Not for Rachel, or any of us watching her go through what she did. The pain from the surgery hit her like a truck. The incision gives her a stabbing pain every time she tries to cough. She could feel the junk inside her lungs that needed to come out but she couldn’t cough hard enough to get it out because of the pain. Since she was taken off the epidural pain medication, the doctors were working her onto an oral pain med. She needs enough medication to be able to cough without too much pain, but not too much to make her sleepy. The nurse we had yesterday and today isn’t the nicest person in the world, and didn’t seem to want to give Rachel the medication she needed. She was also very pushy about her getting up and walking, but Rachel couldn’t get up because of the pain as well.

It was like this all day yesterday. Rachel sat in a chair and we went back and forth with the nurse who couldn’t seem to understand what we were talking about or what the doctors had told us. Finally at 10pm, when the night nurse was on, Rachel got the higher dose she needed. She slept much better and today she is feeling100 times better than yesterday. 

Today the doctors said that because of Rachel’s inability to walk yesterday, that her lung function was down slightly. This is due to her not being able to breathe deeply and cough up the fluid in the bottom of her lungs. We’ve already gotten up and walked two laps twice, walked some stairs, and done some breathing exercises. Rachel has also coughed up some pretty awesome works of art. She’s doing much better, but her white blood cell count is up a little which the doctors are checking out. This could be due something like an inflammation or minor infection. They told us it’s nothing to worry about though.

Brian came in this morning to talk about yesterday’s rough day. He said that today’s a new day, and that we need to encourage Rachel to get up and move every 2 hours to keep her on course to get out of here tomorrow. The bronch doctor came in to make sure that she was coughing stuff up, since it’s imperative that she do so before we can be discharged.

So the orders were to walk every 2 hours and do her breathing exercises as much as possible...and we did exactly that. By 6:30pm this evening my Rachel had walked 14 laps, done her incentive inspirometer countless times, and coughed up an impressive amount of junk throughout the day. And now that she's receiving the correct dosages of her pain meds, her pain is much more under control. It still hurts when she coughs, but it's not the constant pain she was having yesterday. 

This afternoon a home care coordinator called me to talk about the plan for sending us home. She told me that she is talking with Brian to nail down all of the specifics, but that they'd like to send us home tomorrow at 11! Let's pray that that still happens. 

Below are three pictures of Rachel’s old and new lungs:

These are the two sets of lungs side by side. The new one’s are on the left, and the old ones are on the right (The X-ray of the new one’s was taken from farther away, they’re not actually smaller).

These are Rachel’s old lungs. The stuff that looks like fog inside her lungs is called “infiltrates.” It’s mucus, dust, and other stuff trapped in her old lungs because of the thickness of mucus associated with CF.

And these are Rachel’s gorgeous new lungs. Open, free of junk and scar tissue, and ready to give my baby a better life. 

Post Op: Day 7

It's hard to believe that yesterday (Saturday) was one week since the surgery. So much has happened and the days have gone by surprisingly fast. Still though...a week in the hospital is a week in the hospital. it will be nice when we can get Rachel home so she can sleep better.

In the morning Sam and I walked to the hospital. We stopped at a 7-11 on the way in and I bought Rachel a Coke Slurpee, something that was on her "must-drink list" after passing her swallow test. When we got there Karen helped Rachel get cleaned up and did her hair for her. Before lunch Sam and I walked 5 laps around the floor with Rachel. The numbness from the incision is starting to wear off and the pain is making her pretty tired. Still though, when her nurses come in and ask what her pain level is on a scale of 1-10 she'll quietly say "Oh, maybe like a 5." A clamshell incision, spread ribs, numerous catheters, IV needles, finger pricks, sore muscles from being cut and stretched...this girl is tough as nails.

In the afternoon Rachel and I watched "Chopped" on the Food Network until falling asleep. After a 20 minute nap we got up and met with a physical therapist who took Rachel down the hall to work on walking up and down some stairs. I went with them as Rachel walked up and down 4 "practice stairs" in a hallway closet area. Her legs were a little shaky, but she still did great. After the stairs she walked 2 more laps before returning to her room.

Dr. Shah, who performed the transplant, had come in earlier during the day to tell Rachel that he was going to be out of town until next week, and probably won't see Rachel before she leaves. Later a CF doctor, Dr. Merlo, came in to see Rachel. Both doctors said that she was looking and doing amazingly well. It's strange to talk so candidly to the man who saved your wife's life barely a week ago. Thanks again, Dr. Shah, you're the man.

After dinner last night we walked 3 more laps, taking Rachel's total to 10 laps or 1/4 mile total for day! At the end of our walk we sat on a bench and talked about the things we miss about being home together, and what we're looking forward to doing next week. It's going to be awesome to just be together every evening like we would before the surgery. I'd come home from work, help with dinner, eat with her, read the Bible to her after dinner, help her clean up the dishes, then relax in our home with my wife. It will be different when we get home, as she will need 24-hour care (from her mom during the day, and me from the evening on) and will be resting for the better part of several weeks. But it will still be the best thing in the world to be with my wife...my wife who can finally breathe.

Post Op: Day 6

I woke up at 4 yesterday (Friday) morning, wide awake. The noise of hospital mixed with the weirdness of sleeping in a chair makes for difficult rest. I put in my headphones and listened to almost the entire Mumford and Sons album while watching and thinking about Rachel. I don't think I've known a braver person. Think about what she did a week ago: she said goodbye to me in the hallway before her surgery, went into the operating room, put on an anesthesia mask, and closed her eyes knowing what was about to happen and the risks involved. That is pure fearlessness perfectly exemplified. I went back to sleep at 5 and got up around 7. Soon Karen arrived and I went back to the hotel.

While I was there Karen visited with Rachel, who was not allowed to eat or drink anything after midnight since she was having a bronchoscopy the next day. Sam and his brother Bob arrived were there visiting when I got back to the hospital and we talked with Rachel about all the amazing things she's going to get to do once she's home and feeling better. At 1pm her nurse and I went with Rachel down to the endoscopy area for her "bronch." I went back upstairs and watched soccer until she came back up an hour and a half later. The bronch only took about ten minutes, but they had to put her out for it, and give her time to wake up afterwards. During the procedure, they inserted a tube down her throat and into her lungs. They looked inside to make sure all of the internal stitching was holding, and then vacuumed out any junk Rachel isn't able to cough up or her body dispose of. She'll have these bronchs every week for a while, then progressively less frequently has she heals. In the morning Brian from the transplant team told us that she'll definitely be home by Tuesday, and possibly Monday! The average time for lung transplant patients is 2 weeks, if we're here until Tuesday that will be 10 days. Rachel is doing phenomenally well with her recovery.

In the afternoon we had some issues with her blood sugar, as the high doses of steroids that she's on is causing her blood sugar levels to spike frequently. Of course, the celebratory Mountain Dew Sam got Rachel after her bronch probably didn't help...
Yesterday evening Rachel decided that she wanted to go for a walk with me around the floor again. This time she didn't have to hold on to her rolling IV pole (which I pushed) as she walked. She did 8 laps before going back to her room! I stepped it off right after that and estimated that she had gone over 300 yards! Today (Saturday) she wants to try for 10. She's already gotten in 5 this morning. She's incredible. Here this girl is, 6 days out of having a double lung transplant and she's already getting more exercise than the average American...haha. Once we're home she's going to start going to a pulmonary rehab facility to exercise in a controlled environment. There they'll be able to monitor her vitals while she walks, rides stationary bikes, and does light resistance training. After she's finished there I'll work with the physical therapists on an appropriate exercise plan to continue with. I can't wait...

Last night I watched the Food network with Rach like we love to do at home. I said goodnight to her at 9:30 and took a cab back to the hotel. Karen stayed with her for the night so I could get some sleep in a real bed.

Post Op: Day 5 (a good one)

Yesterday (Thursday) morning I worked out before walking to the hospital. Rachel and her mom had not rested well through the night, as Rachel's IV's kept beeping and nurses kept coming in. Karen and I have been switching off which one of us is sleeping at the hospital. It's nice to go back to the hotel and not sleep in a bed, plus her mom is great with washing and doing Rachel's hair, and getting her cleaned up in the morning. Things that I wouldn't say no to doing...but there's just some things moms are better at (just ask Rachel about my hair stylist skills...or lack there of).

Soon after I got there, a couple of nurses came in to try to put in another IV line to give Rachel a unit of blood. From all the blood draws and chest tube suctions they've done they've practically made her anemic. I held her had as three different nurses tried to find a vein, poking her 3 times before giving up for a while for Rachel to have a break from being a human pin cushion. That was ridiculously frustrating for Rachel and all of us. She's been through so much and it kills me to watch her be put through more. Some good did come out of the nurses visit though, as they pulled her last remaining chest tube out.

Later, we asked the nurse if there was any way we could do her second swallow test that day instead of Friday, since we already have a bronchoscopy scheduled and the two test don't really jive with each other. She made a few calls and actually got the swallow test scheduled for 1pm! I know I've mentioned it before, but it's worth repeating that Rachel's thirst was probably worse than any of the other post op issues she was having. Even though she was fairly hydrated from her IV's, her mouth, throat, and lips were so dry it was painful. It was awful to see since there was nothing I could do to help her apart from getting her the antiseptic sponge that she was allowed to use to wet her mouth and lips. After the first swallow test though she was allowed to eat small ice chips one at a time, but that was still no replacement for drinking.
I walked down to the test with Rachel and again watched as the doctors gave her applesauce of various consistencies, crackers, and different liquids. This time though, on every swallow, nothing collected at the top of her airway. Each gulp was more clean than the one before. When she finished she was in tears...and so was the doctor administering the test. Rachel has had such an incredibly positive attitude throughout this whole ordeal, but the discomfort and pain of not eating or drinking for 5 days was getting to her. I said goodbye to Rachel as the nurses got ready to take her back to her room and got what I knew she deserved to have waiting for her: a 32oz Mountain Dew from the soda fountain. She downed it in a few minutes along with a peppermint patty and chocolate covered caramel (her nurses weren't thrilled with her blood sugar after that).

Before long Rachel's nurse came back with the unit of blood they tried to give her earlier, but figured out a perfect time window between several of her medications that she could administer the transfusion in an empty IV line. After getting most of the unit, Rachel was feeling much better and decided to go for a walk with me around the floor. The walk turned into a half marathon-like stroll 6 times around her floor! This was double what she had done on Wednesday, and 2 more laps than she did on Tuesday. I can't wait to run and workout with this girl...she's gonna be a beast (in the most beautiful sense of the word, of course).

At dinner she got to have mac and cheese and a grilled chicken breast and chocolate ice cream a little later. I'm a huge believer of Hippocrates' saying "Let your food be your medicine, and your medicine be your food." I'm sure he wasn't thinking about Haagen Daz ice cream, but it's definitely working for Rach. Also in the evening, Sam's brother Bob came to visit after flying from where he was in southern California. After a nice family visit, everyone headed back to the hotel while Rachel and I watched "American Idol." I helped her get ready for bed, then laid/sat in the reclining chair and tried to sleep. It wasn't a great night for either of us, but Rachel finally fell into a deep sleep early this morning.

Post Op: Days 3 and 4

Ok, so the days have been blending together and I can't exactly remember what happened which day, but here's a recap of the past 2 days.

Tuesday morning I walked with Sam to the hospital after breakfast and a quick workout (they might be short, but I haven't missed a day, in case any of my clients are wondering). Around lunchtime a Brian, a transplant coordinator, came to speak with Rachel and I about adjusting to life at home. There are a lot of things were are going to have to be careful about since Rach will basically be operation without an immune system from the anti-rejection medications, but he kept stressing how much better her life was going to be now. He was very encouraging and did a great job of teaching us how to keep Rachel healthy, but not go crazy trying to do so.

A few hours later my parents and younger sister Bethany came down to visit. They brought me some things we needed from home, along with some gifts for Rach. After talking to us for a while, I took them for a mini tour of the historic part of Hopkins (this place is starting to feel like second home already). After visiting with Rachel some more, I took my family downstairs to the cafe area for dinner.  The visit was great for the both of us. Having the support from my family is amazing. They never once tried to discourage me from being in a relationship that they knew was going to have its difficulties. They also think the same thing about Rachel that I do: her disease does not define her.

Rachel did great with her walking, doing 4 total laps around the floor she's admitted on. All of her doctors continue to express their amazement at how quickly she's recovering. Also this morning another small chest tube was taken out. The tubes drain the excess fluid off from around her lungs. This is something that most people's bodies normally take care of, but Rachel's need to at a faster rate so that her lungs can attach themselves to the inside of her chest cavity.

Her family (Sam, Karen, Mary, and Peter) were around for most of the day, but headed back to the hotel around 7. Later watched "The Biggest Loser" together, a weekly tradition we have. After the show ended we tried to get to sleep, but Rachel's IV machines and her nurses had different ideas. We both hardly slept at all between the beeping and the nurses running around us. Around 2am I felt a hand on my shoulder and heard someone say "Wake up Jonny. Come on, man, you've gotta leave."Apparently I was sleeping well enough for it to take a good bit of shaking to get me up. It was the respiratory therapist who had come in to start an inhaled medication that only Rachel can be in the room for due to her strain of bacteria related to CF (there's still some in her upper respiratory tract). After waiting out in the hall for 20 minutes I came back in and tried to sleep a little more. Being awake to listen to the deep breaths of my wife sleeping made it worth it though.

Yesterday (Wednesday) morning I got up, visited with Rachel for a while, then caught a ride back to the hotel with Sam when he dropped Karen off at the hospital. Back at the hotel I worked out while Mary and Peter packed up to head back to where they live in Boston. Having my "sister and brother" there throughout all of this was incredible. They did so much to help all of us out. Even them just being around helped. We can't wait until we get to visit them later this year as I compete in the Spartan Race (a crazy 3+ mile obstacle course) near where they live and Rachel can visit her sister. Sam left to take them airport while I hung out in the hotel room until he got back. Once he got back we headed over to the hospital.

We found out when we got there that the chest tube that was taken out Tuesday might have to go back in. It was starting to come out, so they took it the rest of the way out, but apparently when it was coming out it was causing a mild pneumothorax (air inside your chest cavity that does not allow your lungs to expand completely) and was not allowing Rachel's lungs to adhere to her chest wall. There was talk about putting the chest tube back in, but apparently the problem was so mild that it will correct itself, as the tube was not put back in as of this morning (Thursday).

Around lunchtime Brian from the transplant team met with us again, this time with Karen joining us. We reviewed what we talked about Tuesday and he answered any other questions we had. He cleared up a lot about traveling, being around kids, cleaning our apartment, being in public, and exercise (all of which I can't wait to help with). It was another encouraging meeting for Rachel, Karen, and I since a few of the transplant people we've met with before made having new lungs seem just as bad as CF lungs (which couldn't be further from the truth).

In the afternoon Rachel did 3 full laps around the floor! She's felt pretty tired all day, and didn't walk any more after that, but she still did amazing. Later we sat on the hospital bed together and watched "American Idol." Rach fell asleep a few minutes into it, and I wished I could have too...it was pretty bad.  After saying goodnight to her and Karen (who stayed the night with her) I caught a cab back to the hotel (I seriously typed "home" at first) and had the best night of sleep I've had since we've been down here.

I called Karen this morning to check on Rachel. They didn't get too much sleep last night, but Rachel's feeling good already this morning. Pray that she has the energy to walk more today, as she needs to be able to walk up stairs before we can leave. Also pray that her last chest tube will be able to come out, and that she'll ace tomorrow's retaking of the swallow test so she can have her precious Mountain Dew...

Post Op: Days 1 and 2

(Sorry for any spelling/grammar errors, I'm not exactly at my linguistic peak right now)

After seeing Rachel and talking to her at 1:30am Sunday morning, her parents and I went back to sleeping on the padded benches in a lobby. First thing in the morning we went back up to see her and she looked even better than when we saw her earlier.

And just like she set a hospital record for shortest time on the ventilator, she set another one on Sunday: fastest time walking after the transplant. I helped her and her nurses as she walked down the hallway of the ICU and back to her room. It was amazing. Less than 24 hours prior those lungs were not even completely in her, and now she's using them to help her walk around.

The day had it's challenges though, as her thirst started to get more annoying. She had not had anything to eat or drink since 9pm Friday night. Her mouth was incredibly dry and the only relief was a small sponge on a stick soaked in antiseptic water. Because of the breathing tube being in and then taken out, her doctors were concerned that her throat might not be ready for swallowing things yet. We didn't want to risk the chance of her accidentally taking some liquid down her wind pipe, since her lungs don't have a cough reflex (since the nerves were cut to transplant them) to get the liquid out.
She was also exhausted all day from the meds and overall bodily stress she's under. She slept for the most part of the day, but it wasn't very restful, as nurses were in and out all day.

Later on in the day the nurses began talking about moving Rachel out of ICU and into a regular room. By 8pm, it was a reality. After spending 28 hours in ICU, and about 35 hours after her transplant, she was in a regular room. Now, it is a high level room and everyone (including me the entire time I'm with her) has to wear gloves, a gown, and face mask. But since she was in a regular room, this meant that I got to stay with her for the night. After talking and praying together for a while, I slept in a chair beside my wife. In the weeks before the transplant I would wake up and put my hand on her back to see if she was still breathing, that's how shallow and ineffective her breathing had gotten. Last night was different though, I could clearly see her chest rise and fall and I can't put into words how incredible of a comfort that is.

Neither of us slept well that night again, as her nurses were constantly in and out. At least she was well taken care for though. The next day (yesterday) she was pretty busy. I was with her as they pulled out two more chest tubes, leaving two left in to drain the excess fluid from around her lungs. She also had a PICC line put in her arm (a tube that travels from the artery in her arm to her heart) so they could take out the IV lines in her neck. This was a huge accomplishment for Rachel, since in the past she would have to be put to sleep in order for the line to be put in, due to the pain.

Around noon a physical therapist came in and did some exercises with Rach. We then helped her go for a walk again, this time doing a full lap around the floor she's staying on. The therapist kept saying how amazed she was, and how this was remarkable for being this soon after the operation. She was also glad to find out that I was a trainer, and that all the anatomical and exercise terms made sense to me. I had no idea why I wanted to change majors to exercise science after my first year of college, but I'm pretty sure I know why now. It's funny how God grooms you for things without you knowing it. I can't wait to help Rachel continue to exercise and improve when she comes home.

Later on in the day (just after the PICC line), I went with her and her nurses for the swallow test. Because she had a ventilator tube down her airway, her epiglottis (the flap that closes your windpipe when you swallow) might not function properly. If she were to accidentally inhale (or aspirate) some liquid, she could get a very serious infection that the doctors could do little about. I watched the X-ray video of the test from behind a wall as Rachel swallowed liquids of various consistencies. She did great with applesauce, but not as well with crackers and pure liquids. This is completely normal though. In fact she did better than most people for her first test. The doctors considered the results of the test and decided to let her start eating things like pudding, applesauce, and mashed up types of foods. She can also now have ice chips to crunch on, as long as she swallows them before they melt. She is so thankful for this limited food privileges though, since her throat and mouth her so dry it was getting unbearable.

She is still on a strong pain med via epidural that is keeping at bay the next challenge in her recovery: the pain from the actual surgery. When I last saw her last night she was doing ok, but feeling a little more pain than before. Her mother stayed with her and I went back to the hotel to sleep in a bed for the first time since Thursday night. It was also the first time I've slept in the same bed as her father...or any guy for that fact. But let me tell you, I was so exhausted I could have cared less...haha.

I talked to Rachel this morning and she said that they removed another chest tube last night, leaving one more still in her. She is feeling much more pain today, and said that she "probably wouldn't be as much fun as yesterday." I don't think I should hold that against her. She did just have a lung transplant, you know.

Keep praying that she continues to recover at this lightening rate and that her pain will be minimal. Also pray for her to be able to rest more, as that's an important part of her recovery as well.