Monday, May 30, 2011

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