• Grace Robinson

What is being on TPN really like?

Updated: 2 days ago

I've been on TPN for almost a month now and have developed a very complicated relationship with it- it's something I love and hate simultaneously. It is a necessary evil.


First of all, you are probably wondering what TPN actually is. TPN is short for Total Parenteral Nutrition, which is basically nutrition that goes through a central line in your vein. I get all the nutrition my body needs over 16 hours a day, 7 days a week. The nutrition is allowing my body to work but it hasn't been an easy process. There is a high risk of complications with TPN and I have already experienced some.


TPN wasn't my first choice, but a last ditch effort. After months of malnutrition due to keeping absolutely nothing down (thanks Mito), I had to do something. I was progressively getting worse and no longer able to get out of bed. All my symptoms were pretty much worse than they had ever been before. My body was failing me. I did what I had to do and it was 100% the right choice.


Getting TPN through a line in my chest is honestly a pain in the ass. Originally, I was getting it through a picc line in my arm, but the line got infected and they had to remove it. They couldn't put a picc line in my other arm because I have a port in my chest on that side so there is already a catheter in that vein. But after two months filled with 4 central lines and 2 infections, all I really care about is this line staying infection free.


Image Description: Picture of my tunneled, double leumen, hickman central line. One leumen has a red peice at the end and the other has a pruple one. The line itself is purple.

Having a central line in my chest affects my life a lot. The line can not get wet so showering is a huge struggle. I have to maintain the lines twice a day. I have to be careful while moving around. I have to keep what's under the dressing sterile. And don't get me started on dressings. It has been one big mess filled with allergic reaction after allergic reaction. And unfortunately, as time goes on, I will experience more complications from TPN as well.


TPN isn't easy on the body. Getting concentrated nutrition directly into your veins affects your body in crazy ways. As time goes on, my liver, gallbladder and blood will become affected, and still, TPN is the right choice for me.


TPN is also very time consuming. Not only am I hooked up to an IV bag and pump for 16 hours a day, but I also have to set up the TPN which is very tedious. I have to keep everything sterile and make sure I'm doing everything correctly, which is very difficult on days when I'm feeling weak. But I do it because TPN is saving my life.


Image Description: A picture on my TPN supplies layed out on my bed. The supplies include a large, clear bag filled with white TPN, IV tubing, saline and heparin flushes, IV vitamins in bottles, alcohol wipes, a syringe, a needle, and my IV pump.

Since starting TPN, my quality of life has improved a lot. Although I still can't walk, I have more energy and am getting stronger. I am able to do PT and OT again. My heart rate and blood pressure have improved and I am having an easier time breathing. My labs have improved and I'm no longer fainting and losing my hair due to malnutrition. TPN is allowing my body to work better- TPN is saving my life and that's all that really matters. What it comes down to is the fact that I love life, and because of TPN, I get to continue living my life.


Grace & Mito

Grace Robinson

A Life Full of Grace & Mito

Chronic Illness Blogger

graceandmito@gmail.com

Pennsylvania, United States