*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
