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TPN at Home Made Easier: My Advice

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Adjusting to Life at Home on TPN

If you’re on HPN (home parenteral nutrition) and you’re having trouble adjusting you’re not alone. First and foremost you are probably still emotionally recovering from whatever put you in this position in the first place. Having a medical condition is a big deal and TPN is another big change in your life.

You will have to learn the process of setting it up and feeding yourself intravenously which can be overwhelming and you may need to adjust to life without food for those of you who are completely NPO. Additionally you might have to learn to answer the many questions you are going to receive about your TPN and possibly even handle unwanted advice or attention. It can all be a lot in the beginning.

Quite frankly I hated it at first. I hated:

  • that my IV pole didn't roll around my house well which made it difficult to get around
  • how heavy the bag was for my weak body
  • that the tubing was so long it was easy for me (and my german shepherd) to trip on it
  • the sight of it because it was a constant reminder of my poor health
  • having to wear a backpack at all times if I needed to go anywhere with it
  • that once my TPN was hooked up I couldn't change my clothes easily with a PICC line so I better be in whatever I want to wear or I'd have to disconnect to take my shirt off.
illustration of a girl standing by an IV pole that has TPN hanging from it

For some reason I was even finding it difficult to sleep at night as if the cord simply made it impossible to get comfortable and the pump made it too noisy to sleep. Oh! I also hated how it seemed like every 5 minutes I had to get up to pee with all that fluid going through me. 

At the time it felt like I hated everything about it but in reality my anger was not about the TPN but rather my current situation. I had just been through a lot and my emotions were a bit all over the place. I was angry at life and feeling trapped and hopeless.

It Got Easier

Along the way I began to adjust and being on TPN at home became easier. A lot of it came down to acceptance and time. The more time I spent on TPN the more normal it felt. Here are some things that helped me adjust to life at home with HPN:

1. Invest in a Quality Backpack

The backpacks provided by Home Health Pharmacies are unattractive and uncomfortable. Even worse, they are impractical for daily living and put stress on your body due to their long narrow shape and lack of padding in the shoulder straps and back. 

2. Consider changing your Infusion Schedule

If you find that you are waking up often during the night to pee and you are not getting enough rest consider switching to day infusions. Some people find day time infusions allows them to use the calories when they need them most instead of getting them at night while they are sleeping. 

3. Make Showering Easier

Testing my DryPro in the Atlantic Ocean
If you have a PICC line I highly recommend purchasing the DryPro PICC Protector. Wrapping my arm in saran wrap and taping a zip-lock bag over my PICC line was time consuming and something that was difficult to do by myself. It also didn’t work very well at keeping the area completely dry so it made me resent my PICC line because something as simple as a shower was a challenge. The DryPro slides over your arm to cover the line and then you use a pump to suck out the air and vacuum seal it. The nice thing is that you can use it over and over again and you can even swim with them! 
 

Showering with a port or tunneled catheter is a bit more challenging. One product that may help you in that area is the AquaGuard which are made to cover central lines while showering.

4. Educate Your Loved Ones

People do not understand not being able to eat. I will clearly explain my situation and people still ask me what I can eat as if “nothing” can’t be the answer. Most of us know at least one person who expresses their love through food like a Grandma who always wants to feed you. It can be challenging and awkward but keep working at it and come up with an answer that quickly explains your situation. Practice your answer and have it ready. 

5. Events that Involve Food

Remember that events that involve food are only one aspect of the event. Celebrate the reason and the people and forget about the food. I have to say that this is one of the things I have struggled with most. It is quite a difficult thing to adjust to but a little mental pep talk can help and so does time and experience. I also think that sometimes I felt a little awkward just sitting there while others ate but I was able to overcome that for the most part by telling myself that I was more concerned about it than others were and that the people with me were just happy that I was there. 

6. Explore your Store

Avoiding food is extremely difficult because that shit is fucking delicious! If your situation allows it can be very useful (and an adventure) to explore your grocery store. Some people on TPN tolerate/are allowed liquids and for others who are not NPO they can eat whatever they can. It all depends on why you were put on TPN and what instructions you receive from your doctor.

You never truly realize how many great things exist in a grocery store until you haven’t eaten food in a long while. Some things that may work for you are hard candy (they turn into liquids if you suck them), tootsie pops, flavor ice, hot chocolate mixes, teas, shaved ice, chewing gum, etc. I went through a span of time where I LOVED frozen drinks like slurpees. You can even purchase your own machine on Amazon so that you can make your own. 

7. PICC Line Covers

Me and Dan. He's wearing the CareALine cover and on this day I was using a sock.

TPN requires a central line and some of you may have a PICC line for it. It is important to keep your line clean and dry and to make sure the tubing does not get tangled in your clothes, hair, or anything else as you go about your day. Two of my favorites PICC line covers are the Care A Line PICC Sleeve and Sleek Sleeves. You can also cut the end off of a sock or sew your own for a cheaper alternative. 

8. Some People Will Stare

It’s a crappy part of life with a chronic illness. Walking around with a backpack with tubing coming out of it going to either your arm or your chest will get you some stares. Even when I do not have my backpack 

hooked up I still get some stares when my PICC line cover shows while wearing short sleeves. This is a lesson on confidence and having thick skin. Do your best to not let it get to you and remember the stares usually occur because people are just curious. Remind yourself of how brave and awesome you are. Most people have no clue what it is like to live the life you do. You are pretty amazing. 

9. Make Friends

Get online and search for others who are on TPN and talk to them. It helps to swap stories and to know you are not alone. I personally like to scroll through Instagram using #TPN. It’s nice to form relationships with others who are in similar situations because chances are you are the only one on TPN out of you and your loved ones. You are not alone! 

One Step at A Time

In the beginning I struggled. I felt trapped, for lack of better words, constantly needing to be connected to a backpack or IV pole. HPN was a constant reminder that I am sick following me around like a shadow. I was very underweight and malnourished when I was put back on TPN so I had lost a lot of strength and muscle. The bag of TPN felt so heavy; I had no idea how weak I had gotten but it really was a struggle for me to wear my backpack of TPN. 

Over time my strength came back and the backpack did not seem like such a hassle anymore. You get used to it and it becomes no big deal. These things will become second nature eventually. You just have to give yourself time and you will adjust! I still have my moments of anger about needing TPN but as time passes it does become easier and before long it’s just your new way of life. Take it one day at a time and you will get there.

Sara

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