The Truth

I haven't really shared a lot of details regarding how truly hard these past 14 months have been, but I guess I can start by saying that what I have gone through is something that I hope no one EVER has to experience. Sometimes it has literally felt like I went to hell and back, and then hell and back again. No part of this journey has been easy, but I've tried my best to focus on the happy in the midst of all the struggle.

We've been pretty vocal about the things that I have encountered during my illness, but there are so many things that I haven't been ready to share - until now. Writing this is one of the hardest things that I might ever try and write - thinking about it makes me tear up. As you may know, I had major surgery last week. I am so incredibly thankful for my wonderful surgeon, Dr. Petty, who, by operating on me, saved my life. I am not over exaggerating one bit by saying that he is the reason that I am alive. There was no way of knowing how bad things were internally, but by opening me up they were able to solve one BIG piece to this giant puzzle. Things were so severe that if we had waited longer for surgery, things could've ruptured and it could've been really bad. Thinking about it actually terrifies me - the fact that if we had listened to the doctors that told me that my symptoms were unrelated, then I could be dead. Luckily, my docs and surgeon from Wake Forest Baptist Hospital knew that what I was feeling was relevant and extremely serious.

Death has always been one of my biggest fears. It's so final. The thought that I could potentially die didn't really phase me until I heard about all that they found during surgery. Now that I know all that they had to fix and how severe it was, I have begun to think about all the "What Ifs" again. Thankfully, none of those "What Ifs" are going to be answered, because, as I've said before, I am in the right hands. I trust my current doctors with my life - and that isn't something that comes easily. I've seen so many doctors in the past 14 months, ones who have disappointed me, but also ones that have given me HOPE. For a while, I wasn't able to trust any doctor that I had, because I knew their initial diagnosis was invalid. Thankfully, I feel like every doctor here advocates for me and is worthy of my trust.

As you've probably read before, it took us a really long time to find the right diagnosis and to get to the right doctors. My parents, both of whom know me the absolute best, fought month after month to get a proper diagnosis. We just knew that it was something structural, NOT physiological. It took 6 months of fighting and pushing for every little medical exam to finally diagnose me with positional Superior Mesenteric Artery Syndrome (SMAS). It took us 3 months after that to find the right surgeon to fix my SMAS, and I am so grateful that we were able to get to Dr. Petty. Ever since we got to him things have gotten better - and sure we've had some setbacks, but I am not lying by telling you that things were still way better than before. Every single encounter with Dr. Petty has given me hope, something that had once before been crushed by so many doctors. Even though things went downhill after my first surgery (LADD procedure), my quality of life was still better than before. I was able to drink water again, and I was able to go to school and see my friends. And when things began to decline rapidly, guess who was there to get me through it? Dr. Petty. This man not only saved my life once, but he saved it again last week.

I have had plenty of doctors tell me that what I was feeling wasn't significant, but Dr. Petty is one of very few that really valued my thoughts and symptoms. He took the time to look into every little thing about my case, which was so essential because nothing about my illness could be based solely on what you might read in a textbook - it was too unique. The surgery that I had (on 1/31) was a big one, but I seriously couldn't have been in any better hands.

Often times people don't understand the importance of a good digestive system - I know before I got sick I didn't know how truly important it is. If things aren't working properly, it can be detrimental. They say that after I think 72 hours of not being able to eat your muscles begin to break down.  I guess what I'm trying to say is that it is so easy to get weak when you can't eat. I have had 437 days of weakness, but I have done all that I can to be as strong as I can. Losing weight quickly has been one of the worst things out of all of this because it means that you also get weak, dehydrated, and malnourished quickly. Dehydration, weakness, and malnourishment have been three things that I have fought the hardest to steer clear of, but in the past few months it was unavoidable. My digestive system was working HORRIBLY and there was nothing that I could've done to prevent it.  For a while we thought my body just had to heal from the first surgery & the 286 days leading up to it. Thanks to Dr. Petty studying all of the tests that he and Dr. Herrera (my new GI doctor) wanted done, they knew that surgery was the only solution.

When I got admitted here, at WFBH, I walked in sheet white. I was hardly even able to carry a small bag of stuff that I had packed. I was admitted a week before surgery, because my surgeon knew that things were only going to get worse. He knew that I needed to have enough nutrients prior to surgery to make things safe and successful. That's the main reason why I had to get a feeding tube and IV fluids - I was SO WEAK and dehydrated and it was not good. Getting the right amount of nutrients is seriously so important. My blood vessels had shrunk to accommodate the low blood flow and I had lost a significant amount of weight. It was scary.

Now that surgery is over, I am in recovery mode. It has been one of the most challenging things that I have ever had to experience. Since they found so many things during surgery, it has made recovery much harder than we all expected. It's been 10 days since surgery, and I thought by now I'd at least be able to have some jello or water. Sadly, I still cannot eat or drink. While the surgery fixed some serious issues, other functional problems have developed. Things were so bad prior to surgery and my system is weaker than we had anticipated. It has been so long since things were working normally, and it's just taking way longer to regulate everything. Everyday there seems to be a new problem developing. A family friend described it as a "wack a mole" - when you fix one problem, a new one pops up - and that is exactly how I would describe what I am going through.

On a more positive note though, I have made a lot of progress while I've been here. My nutrition is far better than before, thanks to my feeding tube, and my pain has improved a ton! So yes, there have been setbacks, but there has also been a LOT of progress, which I am forever grateful for.

Last year when I first got sick, I set one goal for myself - to be able to eat a little cake on my 17th birthday. I was so sick on my 16th birthday, and it was so awful. I was hardly able to walk because I was fainting. I also had a feeding tube. It was really difficult, but I really focused on how I would be better (hopefully) by my next birthday. In 10 days I am going to be 17 and all I want is to be able to have even a tiny bite of some birthday cake - something I can celebrate. At this moment, though, I'm not sure if that'll be able to happen - things are just taking a lot longer than we expected.

There have been a lot of things that I've tried so hard to keep my mind off of - things that I haven't shared. Hopefully by writing this, I might've opened your eyes to the little things that cross my mind every once in a while. 437 days of being sick is a lot - and I know I will never see the world the same again. But, that will be another post for another day.

(If you want to read a more detailed explanation of my illness and all that I have gone through, feel free to go and read my first blog post at the bottom of the home page! It is titled "MY STORY")