Wow, so once again I am started a blog saying that this post is long overdue. I need to say that I am so unbelievably thankful to all of you who were praying for my time at Mayo Clinic at the beginning of May. I’m sorry that I haven’t gotten a good update to you sooner. I feel like I have been telling this story over and over to all of the people around me, so I kind of forgot that there are many amazing people scattered around who care just as much to know what is going on. And for those of you who had no idea I even went to Mayo, I will try my best to include my health journey a bit in this post, but you are always welcome to reach out and ask to know more if you want to know! I’m usually an open book with those things. The reason I didn’t post much on social media and just reached out to people individually for prayer beforehand was because my health journey was very overwhelming and discouraging at that point. I was still struggling and unsure if the doctors at Mayo would even be able to give me answers. I actually typed up a blog a couple of months ago to try to share and had to stop writing and set it aside halfway through. I was sobbing and had to set it aside because my words still felt too heavy & real & I had no idea what the future held, or even sometimes was wondering where my God was in all of it.
Soooo where to start… November 2013 I was living in Spokane, attending Moody, and I got really sick. I can’t even tell you for sure what I was sick with because many different doctors have given me different answers. But I’ll say I probably got a bad pneumonia or bronchitis (they told me at the time it was pneumonia and mono) and I was stuck in bed for at least four weeks, maybe up to six. I wasn’t attending classes, my awesome housemates were bringing me food since I wasn’t going up or down the stairs, and I basically just watched through a ton of TV series. After that I began to have a lot of lung problems in the following months. I had never had any lung problems before, so I was seeing a lot of different doctors to try to figure out what was going on. They were doing a lot of different tests and nothing was making sense, so they told me that I’m a mystery. I seem to hear that a lot so it was nothing new.
To make a long story short, through the years since then doctors have given me different answers and solutions, and I would try them for a while and think that we finally had the answer, but nothing really lasted. I was still getting really bad lung infections, had super low energy that kept me stuck in bed for weeks at a time, was wheezing constantly, coughing up tons of mucus, etc. It was pretty unbearable to feel so sick all of the time, but I also just felt like that was who I was. I just thought I was a lazy, non-active girl who got sick often.
Through these last few years I have gotten sick a lot, but it really reached a new type of unbearable in this time since we moved back to Spokane (actually beginning a few months before we moved). My doctor in Michigan had given me another new idea that I thought made sense, so I was on a super strict diet and was taking a whole mess of supplements and medication (that now I know was actually making me feel worst). My lung problems were not being maintained at all and this diet I was on was making me shrink away. I think the mix of having these severe health problems and dealing with all of the emotions of moving away from Michigan all combined to make our first few months here in Spokane a HUGE mess – even though honestly our move was surrounded by so much goodness. Jesus was so active in restoring us through the mess – almost making the mess necessary so that we would draw near to Him. There were really difficult moments for Joe and I as I needed a lot of care, but also really sweet moments where Joe would stay up with me to watch TV through the entire night because I couldn’t stop coughing, or when I would be sobbing in the kitchen, coughing uncontrollably and so overwhelmed by it all, and Joe would meet me there, at 3 a.m., and show me that I wasn’t alone in it.
So one day my mom was feeling scared for me and my health and just called Mayo Clinic. They so easily made us an appointment that was a month away. I’m not sure what to think of this because now I hear that it’s actually really difficult to get an appointment at Mayo. I’m just thankful that God has led me to the amazing care that I received there because it has forever impacted my story.
If you want to know about Mayo – all I can say is it’s the most incredible place I’ve been. If I had to rate it from 1-10, saying 10 would honestly be a lie. Mayo goes WAY above and beyond anything you could imagine about healthcare. It made me wish that I lived in Rochester, Minnesota. People told us that we wouldn’t leave Mayo without answers and that made me hopeful, but it was also hard to believe. Now I get it. You meet with so many different doctors and they all work together. You tell each one your entire story so that they can understand the full picture. They spend so much time with you and make sure you receive all of the testing and care that you need. They pack your schedule full of tests and appointments to ensure that they don’t miss anything. One person told us that if we stopped and looked confused for a second, somebody would come help us. Sure enough, our first day we stopped for maybe three seconds to read the signs, and one of the Mayo volunteers popped up saying, “Can I help you?!” I won’t bore those who aren’t interested, but if you want to know more about Mayo, PLEASE ASK ME. I love to talk about them.
At Mayo my doctors reminded me that I do not just have one thing going on. I have multiple different things that need to be treated. Some of that I’m just gonna leave out because I’m already treating it, but the main thing I am writing to share is about my upcoming surgery. Yeah this post is going to keep going for a bit.
Back in 2007, I was in a clinical trial called the Magnetic Mini-Mover through UCSF to treat my Pectus Excavatum (just look it up). We chose to do this treatment because we had heard such horrible things about the Nuss Procedure, which was the typical way they have fixed Pectus Excavatum (I call it my dent). Maybe just look up the Nuss Procedure to see what it is if you’re interested. So with all of that, I went into Mayo Clinic completely set on not getting the Nuss Procedure. I kept saying that it was the last thing in the world that I ever wanted to do. And I really meant it. Throughout the week at Mayo, tests were seeming to confirm that I might need the procedure but I was still set on only doing it if it was absolutely necessary. I walked into my appointment with my surgeon, Dr. Moir, explaining all of my fears and was still set on not getting it. I also had people praying through this appointment and I think it made a huge difference. By the end of the appointment, my mom called me out and said it looked like I was trying not to smile. And I remember that. It was hard to hold back the excitement I was feeling. I saw how necessary the surgery is. This surgery is recommended for people if your haller index (how they measure the severity of your pectus excavatum) is a 3.5. Mine is a 7.6, meaning that the pressure that my sternum bone is putting on my lungs and heart is greatly impacting my daily life. Getting this surgery will give me a quality of life that I can’t even imagine right now. As they were talking in the appointment with my surgeon, the way that I am began to make sense. I’m not just a lazy girl who gets sick a lot. I have low energy because my heart has to work extremely hard even just to stand up or walk, and I get lung infections often because I don’t have a lot of lung capacity. Post surgery, my heart and lungs will be able to stretch out and operate the way that most of yours do. The picture below shows this well:
I am so excited for my surgery. It is scheduled for July 11th and it will be back at Mayo Clinic. My parents will meet Joe and I there. I honestly haven’t had any fear about the surgery and just pure excitement, and I think that’s because this whole surgery has been covered in prayer. I have had such a complete peace about it and that was dramatically different than the extreme fear I’ve always had for the same procedure. I’m just rambling now and trying to get some details out. There’s so much more I can say about my health journey, the rest of my treatment, Mayo Clinic in general, and my surgery. Here’s a kind of long basic overview – but I really would love to tell anybody more if you are wondering!
Sorry for the scattered post – but hopefully it is a helpful update for those of you who are wondering! I’m not sure what my health will look like in the future. In this time since Mayo, I have been loving life more than I have in a long time and I’ve just been trying to enjoy that. I know more things will come up in the future, but I’m just praising God for the answers that He has given me and for the treatment I have and will continue to receive. Please be covering my surgery in prayer! I really love & appreciate all of you.