"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 : )