Lana's Life 2.0 - overcoming rare, complex health issues

Firstly, thank you so much for taking the time to learn about my story. This might be a long read, but there is no easy way to describe what I've been dealing with for the last few years. I will try to keep it concise!

For those of you who don't know me, my name is Allannah (aka Lana), and I'm a 25 year-old IU graduate from east-central Indiana. I have a variety of rare, complex medical issues that went undiagnosed for most of my life.

My health started to decline rapidly around the age of 21, when I was a junior in college. In December of 2020, I was diagnosed with a condition called gastroparesis that causes intermittent paralyzation of my GI tract. I had a feeding tube placed in the spring of 2021 to help me maintain a steady weight, but unfortunately, my issues didn't stop with this diagnosis. I ended up losing around 20% of my initial body weight within a couple of months before it steadied out.

In 2022, I was diagnosed with a rare abdominal vascular compression syndrome, superior mesenteric artery syndrome (SMAS). SMAS happens when a person experiences rapid weight loss. A portion of my small intestine is being crushed by another structure within my body, causing what is essentially a chronic bowel obstruction. SMAS most notably causes severe pain after eating, vomiting, and malnutrition. The main treatment is weight gain, but surgery is usually needed when weight gain doesn't help. With SMAS only affecting 0.1 - 0.3% of the population, it's difficult to find doctors who are familiar enough with it to treat it.

I managed SMAS and gastroparesis with tube feedings for a couple of years until I gained enough weight back to have a decrease in symptoms and found a medication that allowed me to eat normally. I powered through and continued to work and go to college, and I graduated in 2022 with a bachelor's degree in psychology/neuroscience! After a few months of being stable, I was thrilled to have my feeding tube removed in 2024. My health was steady for a while until I experienced a flare-up of my gastroparesis symptoms last fall and lost a bit of weight. Unfortunately, this small amount of weight loss was enough to take my SMAS out of remission and allow all of my previous symptoms to come back.

Earlier this year, I was admitted to the hospital for severe abdominal and back pain that we could not find a "simple" cause for. After reviewing recent scans, we realized that I have another abdominal vascular compression syndrome, renal Nutcracker Syndrome (NCS). NCS is a lot like SMAS, but it affects my left kidney instead of my small intestine. Both are compressed by the same structure in my body, the abdominal aorta. NCS causes severe pain, blood in the urine, headaches, and recurrent UTI symptoms. It's caused almost a complete blockage in my left renal vein, which makes it difficult for blood to flow out of my kidney. Unfortunately, my only option to treat NCS is major surgery. If left untreated, my pain will continue to worsen, and the risk for kidney damage becomes imminent.

The drastic increase in my symptoms has caused a significant amount of weight loss within the last month, and I'm at risk for severe malnutrition again. After meeting with various specialists, we decided to reinsert my feeding tube and eventually move forward with surgery. The surgery to treat NCS is very invasive and has an approximate 12-month recovery period. If I need surgery to correct SMAS in the future, it will be separate from the surgery needed to treat NCS and have its own lengthy recovery period. I was urged to take time off to rest and focus on my health so that I can completely recover from everything I have going on.

While I do feel defeated and heartbroken over all of this, I still have hope that this journey will come to an end now that I have more answers than I ever have before. Those who know me well can attest to the fact that I am stubborn and independent, almost to a fault. I have many hopes and dreams and a career waiting for me to start. I will never give up on getting better. These conditions have a way of stripping you bare of who you were before getting sick and teaching you painful, yet valuable, life lessons. Those who have conquered vascular compressions often refer to their second chance at life as "Life 2.0," and I'm looking forward to my Life 2.0 more than anything else I have before.

The last few years have taught me how important it is to have a support system and to ask for help when I need it. Because we aren't sure exactly how much time I'm going to need off for traveling to/from appointments and procedures, surgeries, and recovery, I'm looking for just a bit of help with monthly bills and gas. Please don't feel obligated, but any donation would be very much appreciated. If a donation isn't possible for you, I kindly ask that you share this page instead. Above all else, I am eternally grateful for anyone who takes the time to read my story. From the bottom of my heart, thank you. ♡