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 22nd 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!
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