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 : )