"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