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Thank you Dr. Akinkuotu

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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, vitamin d
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National Feeding Tube Awareness Week

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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
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LIFE UPDATE: 10/8

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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 actually don't remember much of
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National MALS Awareness Day

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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,
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BIG NEWS ....

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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
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Better than Good

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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
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FEELING GOOD.

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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
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