Tag Archive for: gastro paresis

Independence

wolfram syndrome independenceI recently moved out of my parents’ home to live on my own in an apartment all in an effort to gain some independence and self-sufficiency. It has been a start to the next chapter in my life with both pros and cons. It feels good to depend on myself to fulfill everyday tasks but it will take some time for my family to relax and feel confident that I can fend for myself.

The whole scenario was made possible after acquiring the Dexcom continuous glucose monitoring system with Share. This device accurately monitors my glucose levels and through Bluetooth communicates with five chosen followers who can also see what my glucose levels are. For the first time in my life other people can see part of what my body is experiencing. As some may have guessed, when my glucose level is below 150 mg/dL all my following family members believe that my glucose is plummeting and I need assistance. The drama has settled somewhat and they now see that an assistant is not needed to feed me orange juice and peanut butter but I am fully capable of serving myself.

Next in line is the cell phone chaos. When my glucose falls a little bit I receive phone calls from three or four of my followers, regardless of the time of day. If I do not have my phone by my side, I am in the shower, using the restroom, or in the gym and someone is trying to call me but I am unable to talk it is all perceived that I am in trouble. Thus, a family member is dispatched to my apartment or 911 is called and then canceled when I become available. I know I should just be thankful that I have a family who cares for me as much as I do but it make everyday living a bit difficult. Although, the yo-yo effect my glucose readings go through is mostly my fault. It seems the harder I try to control my glucose levels the harder it becomes. The exercise I participate in six times a week, my Gastro Paresis, and my limited diet all play a part in my frequent glucose fluctuations.

Everyone has a story and everyone has something he or she struggles with, my struggle in life is health (Wolfram Syndrome). I remind myself everyday that challenges in life are a given but coping and pushing forward are choices. My prayers rest with the Snow Foundation to fund research and Dr. Urano in finding a treatment for Wolfram Syndrome.

flyinointmentFly in the Ointment

My uncle was the head baseball coach at Tulane University for a little more than 20 years and he, my aunt and I attended the Tulane alumni event in New Orleans, LA. When I was younger I used to be the equipment manager for the Rick Jones Tulane Baseball camp every summer for about 12 years. Thus, I got to know the players, coaches, and several alumni in previous years that also attended the 2015 Tulane alumni event. I had a fantastic time but simultaneously I felt like a man surrounded by worry.

Between glucose levels, food availability, catheterization, and Gastro Paresis there was always a question and or worry in the air. I was asked every hour how I was feeling and what my glucose is. Each day and night the meals occurred at the same time to the minute making sure I do not cause any problem because I strayed off from my routine. Like usual, restaurant choices and food offering were analyzed prior to dinning so that I did not run into issues with my digestive system. Each night my aunt was adamant about having peanut butter, orange juice and crackers on standby in case hypoglycemia occurred. Before attending the alumni baseball game my aunt pointed out that she was bringing her purse packed with peanut butter crackers, orange juice, protein bars, and bottled water; I made her fall out laughing when I said “let’s forget sitting in the stands and just tailgate in the parking lot.”

All in all, I had a wonderful time talking, laughing, and seeing faces I have not seen in many years. Even though I felt like a fly in the ointment and Mardi Gras was taking place, which made it a little tough to get around, I had the time of my life and would relive it just the same.

All Gassed Up

wolfram syndrome and gas issuesNerve damage caused by Wolfram Syndrome results in many lifelong complications, some minor and others very severe. Eating and drinking has been one of the never ending issues I have struggled with. Regarding food and drink, issues experienced by Wolfram patients consist of glucose fluctuations, mood swings, low tolerance for specific food groups, as well as metabolic problems.

In the past few years, my metabolism has suffered from nerve damage making eating and drinking feel like a chore. My diagnosis is called Gastro Paresis and it is caused by pancreatic and metabolic nerve damage. After the pancreas has experienced nerve damage, the body runs into a deficiency of metoclopramide, which is a pancreatic enzyme that promotes proper contraction in the metabolism. The symptoms I have experienced are gas, bloating, nausea, acid reflux, heart burn, and indigestion. I have been prescribed a metoclopramide pill but unfortunately the symptoms still exist. The purpose of the medication is not to defeat my symptoms but to prevent my metabolism from falling asleep and resulting in a hospital visit due to constipation.

I experience gas, bloating, acid reflux, heart bun, and indigestion each time I have something to eat or drink so eating and drinking is more painful than pleasurable. I know that my circumstances could be better but they could always be worst. I just remind myself to count my blessing and be thankful that I can still chew and swallow because a feeding tube is the next stage.

Chasing the Numbers

Adam Zwan struggles with his glucose levels.Wolfram syndrome makes it more difficult to treat and control all other more common illnesses. A Wolfram patient has to deal with diabetes, kidney failure, optic atrophy, and deafness but all these conditions are further complicated due to Wolfram syndrome. Currently, one of the most troubling tasks in my life is trying my best to control diabetes.

In simplest terms it is called chasing the numbers; these numbers represent glucose readings. Wolfram syndrome has increased my sensitivity to insulin and as a result, causes me to require less insulin to combat food and high glucose readings. On the other side, I have developed gastro paresis, which is a fancy term for delayed stomach emptying. There have been many cases where regardless of what I eat my glucose level is uncontrollable.

With all the complications due to Wolframs, any time I swallow something it is an uphill battle. My increased sensitivity to insulin causes an immediate drop in glucose level after taking insulin to combat carbohydrates. Hours after eating, a jump in glucose level occurs because my stomach has finally emptied the food I ate sometimes 15 hours earlier. These glucose fluctuations may be difficult and frustrating to deal with but I’m just thankful that I can still eat food and not depend on a feeding tube.