On Accepting That Getting Off TPN Isn’t My Biggest Goal

It seems to me that one of the biggest goals for everyone surrounding a TPN dependent individual is to get them off of the therapy. I even had a doctor I had never met before come into an exam room and the first thing he said to me was, “Alright, we will be stopping your TPN.” Needless to say, I broke up with that doctor because he did not understand my reality (and turns out pretty much no doctor in NW Arkansas does, hence why I still travel to Dallas for my care!) Anyway, 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 (even though I still struggle with accepting this myself every single day.)

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. (The aftermath of that below.)

My Story Part Eleven 2
Lukaza and I at her house!

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.

My Story Part Thirteen 3
Livin’ that Kleenex in the nose life!

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? It’s gonna be 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.jen day00112web

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.

Another of course, if you are able and working to get off of TPN therapy, that is AMAZING news. This post is for those of us struggling with the reality that the day we are off TPN may never come, and coming to terms with the life it does allow us to have ❤

2 thoughts on “On Accepting That Getting Off TPN Isn’t My Biggest Goal

  1. Wow, Lauren, I read your blog on living on TPN, you’ve come such a long way.
    There are days where I hate being on it & days where I eat & remember why my team decided to put me on it in the first place. I can do more with my kids even though the long term effects of malnutrition have done damage to other parts of my body (kidneys etc). it’s given me time with them that I may not have had otherwise. The mental adjustment is hard but I’m still a newbie (2years) I’m sure my head will adjust over time. I’m so grateful for what it has done for me & as I look at the change in you from the photos I can see just what a blessing TPN actually is.

    Liked by 1 person

    1. Thank you so much for your beautifully honest response. There are absolutely days where I hate being on it as well. It’s a constant balancing act (just like everything else.)
      I am so glad TPN has given you more precious time with your kids.
      I would love to connect with you and chat more if you’d like to. Feel free to add me on Facebook, Instagram, or email.
      I’ve found that part of this process of coming to terms with long term therapy has involved connecting with those who have been on therapy much longer than I have. It has made me so much more hopeful having examples of it being possible.
      Thanks again for your lovely thoughts! I hope to connect soon 💛

      Like

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