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