There is a sinking feeling when you scroll down your page and see that once again, another person has lost their fight. This is the 31st person this year who has lost their battle against Gastroparesis. The 2nd person this week.
You might not have even personally known them and yet there still is a pang in your heart, your chest tightens and you wonder if one day you will see your friend’s name illuminated by that green candle, or even your own. People are starving for a cure… literally.
Gastroparesis is a rare disease that effects fewer than 200,000 people per year in the U.S. not to mention the thousands in other countries as well. Some cases are idiopathic while others are brought on by Diabetes, Crohn’s, Ehlers Danlos, and various other conditions.
Everyday it seems like someone is in the hospital whether it is to have tubes placed, have tubes removed, infections in tubes, central lines, central line infections… the list goes on and on.
For some people they can take medication and their symptoms will be controlled with just a little bloating and discomfort with certain foods, for others food is not even an option and feeding tubes have to come into play to bypass the stomach, and for some even feeding tubes can’t help and they must be put on TPN (IV nutrition) through a PICC or Central Line. All of these have their risks.
I think of my friend, Ari, who I haven’t even gotten to meet yet and how she is in and out all the time for sepsis. The doctors told her that they don’t think she will survive another battle against sepsis. Of course Ari is a fighter and says she’s lived through more than they thought she could and that this is no different and she won’t stop fighting.
And I think to myself about those 31 other people and their fights. Some of them ended by sepsis, some of them ended through malnutrition. I panic when the doctor tells me that my resting heart rate is 140 because of my malnutrition. It makes me paranoid and hypersensitive of every abnormal pang in my chest. The stress and sadness of seeing fallen fighters doesn’t help.
I’ve made so many friends through support groups for Crohns, Gastroparesis and Teens with Feeding Tubes and Ehlers Danlos Syndrome. And I am always terrified that one day I will log on and discover something horrible. I think of Alexandria Davis who died due to Crohn’s complications, I think of Ari constantly fighting sepsis from her lines for TPN, I think of my friends I’ve made in other countries who I have never met in person but I certainly don’t want that chance to be taken from me all together.
I don’t know what I would do honestly. They’re like my family to me. They’re the only ones who understand what I go through and we can relate to each other. I know they surely feel the same way I do. I can only hope that our fights last a long time and we hold out as long as we can.
I know they are no longer suffering, but the bad thing about death is one person’s suffering ends but it causes more suffering for those that their lives touched, even when I didn’t know them they still have an impact on my life and so many others. Rest well guys, you fought hard, you deserve the peace.