We’re on our third Friday of Awareness month, can you believe it? Because it’s Friday, we’re featuring another Champion Patient story. This week, Lauren Reimer-Ethridge. I (Samantha, Pact Blog Editor) have had the privilege to get to know over the last few weeks, and am excited for you all to get to know her as well! Read her piece on life and TPN below!
It seems to me that the biggest goal for everyone surrounding a TPN dependent individual is to get them off of the therapy. While this is an amazing goal for lots of people who experience the need for parenteral nutrition at some point in their life, this is not always the case. And I’m here to tell you that that’s okay.
I began my venture with IV nutrition support at 13 years old; not long after receiving my diagnosis of Chronic Intestinal Pseudo-Obstruction. At that point, my biggest goal with every doctor’s visit was to cut out one more day per week. At this time, this made total sense for my situation. I was still able to consume foods and maintain my weight and the days slowly dwindled down to 3 days per week.
For years I was able to maintain a somewhat healthy body on this regimen. But when my doctor asked if I’d like to see how I would do without it, things went downhill quickly.
If you had asked me then, I would have said I was doing amazing! I was off TPN! It’s all I’d ever wanted and it was my goal all along, right? I was doing great!
I wasn’t minding what the scale said. I wasn’t minding how my body felt. I wasn’t minding that there were days I could barely sit myself up out of bed. None of that mattered.
I made it about nine months without TPN before I found myself in the midst of the longest hospital stay of my entire life while on vacation in California. I was stuck inside of a La Jolla hospital for two full months. I had really gotten myself into rough shape. All because I was priding myself of being free from what I’d felt I needed to get away from for so many years. There, I was told I needed to get back on it. And this time, I was unable to consume food by mouth. My condition had worsened and I was unable to tolerate even the simplest of foods.
So I started all over; seven days of week of TPN. And you know what? That was five years ago, and I haven’t dwindled one single day off of my regimen.
And you know what else? That’s totally okay! Because I am the healthiest and happiest I have been since I was a child. TPN gives me the energy I need to thrive, and that’s exactly what I feel like I’m doing!
I have a wonderful team who makes my TPN to where it’s perfect for me and keeping me as healthy as possible. I am not surrounded by clinicians who try to pressure me to do things that could hinder my quality of life. They understand my disease state and can see that my body is doing exactly what it needs to do.
Of course there are severe risks with a therapy as invasive as IV nutrition, but this cannot discount the full life it has given me and many of my friends. It is possible to live a healthy and fulfilling life on TPN, and I am so thankful for that every single day.
About our Champ: Lauren is a 25 year old vintage-loving, wife and puppy mama. She lives in Fayetteville, Arkansas and works as a patient advocate for an infusion pharmacy. She was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO) at age 13, and has been on TPN (IV nutrition) since that diagnosis. She has a blog where she shares her experiences and tips she’s learned through the almost 13 years she’s been on TPN and the ways she copes with CIPO that you can visit at Pretty Couch Potato.
Do you know of a DTP Champion? Or do you think you are a champion? Nominate someone, or yourself to be a spotlight patient! Email Samantha at firstname.lastname@example.org