Livin like LewLew

A lot has happened since I last wrote -- the biggest being that I graduated (!), which was such an exciting and monumental accomplishment after everything I have been through. Honestly if you had told me in 2021 when everything happened to me in the ICU, I never would have believed I would get to this day. I graduated a semester behind, which is almost a miracle because my ICU experience caused me to withdraw from all classes that semester and underload the subsequent semesters. Graduating from the University of North Carolina at Chapel Hill has been a dream of mine since I was a kid, and having gone through everything I did and still graduating in 2024 feels so rewarding. I told my parents that because I was graduating in December without the friends I spent most of my college experience with, I didn't actually want to go to the fall graduation. Instead, we threw a big graduation party at Pantana Bobs with all of my loved ones, family, friends, and mentors. I know, what a funny sp...

Yesterday I got to see the surgeon that saved my life two and a half years ago and it was so special. The last time Dr. Akinkuotu saw me I weighed 100 pounds, I was sheet white, I was weak, and we had no idea when things would get better. Since then I finally got to a stable weight, I have my color back, I no longer use my feeding tube, and I overall look a lot healthier.  I will never forget the excitement that Dr. A had in her face when she walked in the room yesterday to greet me -- because of how much better I look. It must be pretty rewarding to see the impact that she has had on my life. I can't even begin to describe how grateful I am for the care I have received from Dr. A and her medical team these past three years. Dr. A not only saved my life, but gave me a chance at a new healthy one and I am forever grateful.  While I look healthy, I still have daily struggles as a result of everything that happened to me. I still have kidneys that cannot hold onto potassium, vita...

Long time no see! Thought I would do a quick post in honor of it being National Feeding Tube Awareness Week! I've had a feeding tube (on and off) for around 4.5 years now and I can without a doubt say that it has saved my life. Sometimes you have to be patient and try different types.  Before I was diagnosed with positional Superior Mesenteric Artery Syndrome, I was given an NG tube. It was pure hell. I went from throwing up all day to throwing up all day AND all night. It was horrible. Despite still believing that I was having a "brain to gut" response and that there was nothing structurally wrong with me, my doctors eventually switched me to an NJ tube which bypassed my stomach altogether. The tube was on my face but it was okay because in a way it validated all that I was going through. I was diagnosed with SMAS in a clever way that helped change the way that doctors test SMAS now, but that's a whole other topic. BUT when we discovered that I had SMAS, it explained...

I’m sure some of you heard about what I’ve been going through medically, but in the past fourish weeks I underwent 3 life saving surgeries at UNC. I had a feeding tube placement procedure done at Wake Forest Baptist Hospital at the very beginning of October that resulted in a terrible "catastrophe". The adhesions from my previous three surgeries (for SMAS and MALS) made placing a GJ feeding tube more difficult than  before,  and the Interventional Radiologist said she put her full force to get the tube through. We believe that this force  along with  my complex anatomy, made it so  my stomach disconnected from the wall and left a  giant  hole spilling my gastric contents all throughout my body.  This led to infection pretty much everywhere for over 6 days and my doctors here worked very hard to get rid of it.  Thankfully we had an appointment scheduled with my complex care physician, Dr. Michael Steiner, 36 hours after WFBH discharged me. I a...

It's been a while since I've written on here - I've been really busy! But I figured that since today is National MALS Awareness Day, that I would do a brief post. As many of you know, over the past three years I have faced two really overpowering and consuming conditions known as positional Superior Mesenteric Artery Syndrome (SMAS) and neurogenic Median  Arcuate Ligament Syndrome (MALS). Yes - they are as awful and intense as they sound. They took away my ability to eat and drink. It was so bad that I couldn't even keep down a sip of water. They made me become severely malnourished and weak and I fainted a lot. My feeding tube became my lifeline, my only source of nutrition. And the pain that accompanied all of that was horrible. I ended up having to have THREE major abdominal surgeries to get rid of these compression syndromes. It definitely wasn't fun. And the recoveries that came with each surgery were so long and frustrating. My last surgery was in March 2020, ...

Hey everyone! It's been a while since I last wrote.... but I have some big news!!!!!! Yesterday (Tuesday December 22nd) I got my gastro-jejunal (GJ) feeding tube taken out ... FOR GOOD ... and I couldn't be happier. If you didn't already know, I had a feeding tube in my stomach that used to be my main source of nutrition and hydration when I was sick. Because I wasn't able to eat normally due to my SMAS and MALS, my feeding tube became somewhat of a life line for me. It kept me from having fainting episodes and being malnourished. And while at times it caused severe pain and discomfort, I am so grateful that I had it. It kept me alive when my body wasn't working right. It kept me alive when I was misdiagnosed and none of my doctor's recommendations were working. It kept me alive when things went terribly wrong in my body, requiring an emergent open abdominal surgery.  It gave me strength to keep fighting, even when I was so weak that even thinking about getting ...

I know it's been a while, but I feel like now is the perfect time to do a blog post. In just a few weeks, it'll be nearly three years since I first got sick. And boy has THAT been a roller coaster. But here I am three major abdominal surgeries later and I am finally feeling good again.... actually I am feeling GREAT. And it is so exciting. I haven't been able to say that in years. I missed 2.5 years of high school due to my illness... but I worked hard to graduate on time, and now here I am in college at UNC, feeling better than good. Even though college is a little different this year (because of COVID), I am still so overjoyed that I am well enough to even be here! When you've gone through what I went through you learn to count your blessings - even if they seem little to others. I owe all of my thanks to my amazing surgeon, Dr. John K Petty. Dr. Petty is without a doubt one of the best surgeons and people that I have ever met. I remember after my MALS surgery I was s...

For the first time in 2.5 years, I can confidently say that I am feeling GOOD . My system is FINALLY working properly (especially now that we released those angry nerves being compressed by my Median Arcuate Ligament). I mean picture this: all of the nerves that supply your digestive tract are wound around SO tight that they do not work. Trust me, this messes with more than you could ever imagine. For so long my "normal" was trying to cope with an injured sympathetic nervous system. Weakness, bloating, fainting, shortness of breath, constant nausea and pain every time I ate or drank, and an inability to maintain weight. These were all some of the many things that I experienced pre-MALS surgery. Safe to say that my "normal" wasn't easy. So for me to say that I am feeling genuinely  GOOD  is something worth celebrating. Fixing my SMAS compression gave me the ability to eat and drink small amounts again. But unfortunately, it did not rid me from the pain an...

Recovery sucks. It's painfully slow and feels like it's never going to end. But it will. It seems like every time I make progress, there seems to be some new problem that pops up. Like even yesterday: I got my epidural out (which has been numbing my pain since surgery) and I've been handing it pretty well! I'm definitely sore and I feel dull pains all through my insides but I've been able to fight through that. I can handle a little pain here and there. But then when i thought THAT was the worst of it, I began violently throwing up bile - for what seemed like hours. Thankfully, I have a GJ tube that allows me to drain my stomach so I don't have to throw it all up, but it isn't fun. This morning alone I've drained 1500 mLs (1.5 Liters) of bile. That's a whole lot of bile - & it isn't even supposed to be going into my stomach!!! And then my IVs. Oh boy. Those things suck. And for whatever reason my body just can't seem to keep them. You...

Today I got to spend some time with these two girls, Sam and Allie. It was kind of crazy talking with both of them because we've all endured such similar things. Sam and Allie both had recent surgeries for SMAS and MALS. And while both of them are in recovery, they know exactly what I am going through right now. Surgery is tomorrow and I am scared. Scared about recovery, the pain I will feel, and most importantly the surgery itself. There is always the risk for complications, and while I have COMPLETE faith in Dr. Petty and his team, I am still a little nervous. I mean, not only are they cutting into my stomach, but they're going to be working around an artery. They're going to be separating the nerves that are wrapped around my celiac artery, as well as releasing the median arcuate ligament that is compressing it. I'm nervous. Nerves are so sensitive and I'm afraid that by messing with them/detaching them from the artery, it's going create overwhelming pain...

Hospitals. Something I've become so familiar with in the past 2.5 years. Between having countless tests, MRIs, CTs, tube replacements, hospitalizations, and two major surgeries, I'd say I'm pretty used to it. But, despite being so accustomed to hospitals, it's still scary for me every time I'm told that I have to go back. As you might've read in my last post, I was recently told that I have something called neurogenic Median Arcuate Ligament Syndrome, otherwise known as MALS (Click  here  to read more about it). Basically, one of my arteries is being compressed and has been causing the agonizing pain, discomfort, and nausea that I feel every single time I eat or drink. It is likely that I had both MALS and SMAS at the same time - but with my last two surgeries, we were only aware of and treating my SMAS. MALS is the leading cause of my inability to progress and get back to normal. The pain it can cause is truly debilitating but I try my best to smile through...

On Thursday (February 13th) I had a procedure known as a celiac plexus nerve block & it confirmed that I have another compression syndrome. I have something called neurogenic Median Arcuate Ligament Syndrome (MALS). Basically, one of my arteries is being compressed and is causing an immense amount of pain. It's pretty complex, but all that you really need to know is that MALS has been preventing me from getting better. It is the reason why every SINGLE time I eat, I end up curled up on the floor, stretching, trying to get rid of the bloating, pain, and discomfort that I feel. It's the reason why it takes me over an hour to eat less than a cup of food. It explains my weakness and regression. On Thursday I had a nerve block procedure where they injected two needles bilaterally into my back, digging through my skin and muscle to find the bundle of nerves that's being affected from the MALS compression. Once they found the bundle, they injected a numbing medicin...

I know that I haven't written on here in a while, but I finally had the energy to write a little about my life at the moment. Every day since December of 2017 I have fought and fought to get better. There hasn't been a day that I haven't worked to make progress - even when the odds weren't exactly in my favor. I thought that when I had surgery January 31st of 2019 that I was finally going to kick this whole sickness thing to the curb - but sadly, I am still continuing to fight through this long journey that so many of you have helped me through. In the past few months I have been trying SO hard to prove to my docs that I can get my feeding tube taken out. We put the tube feeds on pause starting in August 2019, and I haven't been using it at all since then. I've been working tirelessly to try and get enough calories to maintain my weight. I can only do small amounts every four-ish hours with lots of dietary restrictions, but I've been working so hard arou...

I know it has been a while since I last posted. Being back in school full time and dealing with some health set-backs has sucked a lot of my energy. I've been exhausted lately. Going to a full day of school and then having to study and do homework and apply to colleges on top of that is mentally draining. And then I try to do fun things that truly make my days feel better, but by night time I'm exhausted. And that's okay. I'd say I'm handling it all pretty well, considering that this is the first time in like 2 years that I have attended school full time. My weight has consistently been declining, and it's been really hard for me. If it gets below a certain point, then I have to go back to tube feeds, and I just really want to move in the direction of getting my tube OUT not going backwards. I've been working so hard to get as many calories as I can - it's like a full time job. I have to plan my day around when I can eat, and it's exhausting. Eve...

I know it's been a while since I have written, but I wanted to take a quick moment to give a little life update. First of all, it's been almost 9 months since my surgery, and I have continued to make progress every day since. It's been sort of surreal. 9 months ago I was barely able to keep down 50 calories a day, and here I am now at nearly 1700! I am so proud of the progress that I have made. I currently still have my feeding tube, but for the past couple of weeks, with doctor approval, I have not been using it. I've been working tirelessly to try and prove to my doctors that I can get enough calories orally (without the tube feeds) so that way I can get my feeding tube out. But sadly, my weight has been consistently declining, and my doctors are worried that if it continues it could lead to nutrients loss & other issues. Most people might say "well just eat more!" It's easier said than done. I had a study a few months ago that revealed that ...

I know I haven't written in a while, I've been super busy with summer, traveling, etc. I wanted to write a post more specifically to people going through a rough time. And if you fall into that category, know that there will be bad days and there will be better days. We are all going through something in one way or another. Some may be overwhelmed with school, studying, work. Some may be fighting a battle that they just can't seem to overcome. Some may be mourning a loss. We all know what it's like to have days that are never-ending. But in the end, even if the days are tough, long, and sad, try and focus on the good stuff. Being chronically sick sucks. There's really no way to sugarcoat it. There are moments where all you want to do is scream and yell, "why me?" Sometimes all you want to do is give up. I know I had moments like these. Moments where it felt like I would never be able to eat again. But despite the trials and obstacles I faced, I kep...

I realized that I mention SMAS a lot, and some of you may not be fully aware of what it is. SMAS stands for Superior Mesenteric Artery Syndrome. Only 0.3% of people in the United States are known to have it. Sadly, I was one of those people. SMAS happens when part of the duodenum is compressed by the Superior Mesenteric Artery. When this happens, it is almost like a kinked hose or a pinched water balloon. If you were to step on a hose hard enough, no water would be able to pass through. The same thing happens with the duodenum when the Superior Mesenteric Artery does this. If you don't know what the duodenum is, it is be the tube between the stomach and the small intestine. Its job is to squeeze the stomach contents through the digestive tract. With SMAS, it took away my ability to eat, because there was no way for food to pass the kink. Since I went misdiagnosed for so long, my SMAS caused a lot of damage to my duodenum. SMAS is very rare and misunderstood, and unfortunately it i...

Recently, I had a pretty big medical exam called an antroduodenal monometry study. The test showed us the function of different parts of my digestive tract. It was a pretty awful, lengthy test, but I won't go into much detail. All that's important is that the test revealed that the section of my duodenum that was damaged has not recovered. My duodenum suffered for over a year, and it just hasn't been able to regain its full function yet. We are hoping that with time it'll heal and start working as it should, but if this doesn't happen then I might need to have another surgery. We are praying that another surgery isn't necessary, but if it is we will find a way to get through it. We didn't get the results that we had hoped for, but it is what it is. I guess the real question is what is my life going to look like until things are normal again? It's a pretty hard question. Currently I am able to get around 1000 calories by mouth which is an ACTUAL mirac...