Learning that I was going to be on TPN for the rest of my life was a bit scary at first. I had no idea what to expect.
What Is TPN (Total Parenteral Nutrition)?
Total parenteral nutrition (intravenous feeding) is a method of getting nutrition into the body through the veins. Some patients need to get only certain types of nutrients intravenously.
TPN may include a combination of sugar and carbohydrates, proteins, lipids (fats), electrolytes, and trace elements. The nutrition will contain all/some of these substances; it depends on your specific condition and your nutritional needs.
Why Would You Need TPN?
TPN is needed when all or part of a person's digestive system does not work. A person may need it because of a gastrointestinal disorder that severely limits the ability of their digestion. You may not be able to swallow food, move the food through the digestive system, or absorb nutrients from the food that you do eat.
Some children and adults who are on TPN may have short bowel syndrome; commonly known as short gut syndrome.
Short gut is a condition in which most of the small intestine is either missing or doesn't work. The small intestine is very important. It helps you absorb nutrients from the food you eat. Other reasons that a child may need TPN are intestinal diseases, like microvillus inclusion disease or trauma or injury to the intestines. Many children and adults who are on the waiting list for an intestinal transplant are on TPN.
What Happens When They Give You TPN?
If you have to have TPN, the first thing they will do is a lot of blood work, naturally. After they get all your blood work done, they will set up with either a PICC line, a central line or a feeding tube as the norm. I have a central line in my chest with a Hickman catheter. Inserting the line is done under anesthesia or a local and is fairly easy.
Adjusting TPN and Hospital Stay
I was in the hospital for seven days while they got the right "cocktail" going for me to go home on. I'm not going to lie, when they send you home, you are basically on your own. I really had a hard time with that when I walked in the door. I was afraid I wouldn't know what to do or how to hook myself up. It's a frightening experience at first because when you are in the hospital, they tell you of all the bad things and precautions. Now, these can happen, yes. If you do what they tell you to do and be extra sanitary, then you have done all you can.
A nurse may or may not come to your home weekly. I have a nurse that comes every week to get blood work, check my vitals, change my bandage and check my line. Some areas have you drive to the nurse or doctor's office to get that done; I'm really not sure how other areas work. Also, don't panic too much. The nurse will also come out daily until you learn how to hook yourself up on your own. I took three or four days and then was doing it—nervously, but I did it.
Keeping a Clean and Sterile Central Line
Anytime you are messing with your central line, it is an absolute must that you are clean. I have sanitizer all over the house and wash with soap and water (scrub) and use the sanitizer on top of it. Always use alcohol swabs before using any flushes or messing with the end of the line and scrub for 15 seconds with the alcohol. It will help keep infection out; but as I'm sure you were told, or if you haven't started TPN yet, you will be told that it's almost inevitable—that someday, you will get an infection.
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Do your best and don't take the situation lightly, as it can be serious and fatal if you get an infection in your line. An infected central line can lead to sepsis and other problems. Keep your line flushed daily to keep blood clots from forming. All this information should really come from your doctor; I am just telling you my experience and what I was told. Don't do what I am telling you to do, PLEASE!
Central Line Infection
You do have to worry about line infection or possible clotting in the line. Clotting can be helped for flushing your line a couple times a day (that is what I was told, please check with your physician for their recommendations).
Each doctor does things differently as far as what to put in your line daily to help infection and help prevent clotting. It depends on what type of system you are using, ie; picc line, chest catheter (central line).Some doctors will have you place heparin into your line daily for clotting and others won't. I do not use heparin in my line as it's not my physicians choice for my type of line. To help prevent infection, I place 3 mls of an ethanol lock into my line and let it sit in there for a minimum of 3 hours.
Going To Bed With TPN
You learned how to hook up your TPN and they taught you how to place the bag in your backpack so you can be mobile, walk around the house or go somewhere if you wish.
When its your first time or so for getting ready for bed, you may be scared to death to go to sleep with the long line hooked up and have it hanging down draped down over you. You really should be careful as I tripped on it a few times. Not good! I could have pulled the line right out of my chest.
I used to toss and turn and like to sleep on one side or my stomach. That's not happening any longer. I have learned to not move because I don't want to twist my line up. Make sure your line is strapped in securely inside of your backpack but not too tightly. If it gets tight, it will pull on the chest and you don't want that. You will find what works best for you, but I don't sleep well at night because of it. Others may have a trick I don't know about and if you do, I more than welcome the suggestion. Make sure to mention it in the comments section below.
I hope I gave you some information that can help you out some. There is so much information you need to know; I cannot fit it all on one page-and frankly, it's information you need to get from your physician. I can tell you that I gained 30 lbs which is good because I was down to nothing. I couldn't even walk, now I have strength to walk half block and have some sort of a life. I'm not great by no means because of other issues, but at least I'm alive which I wouldn't have been if it wasn't for TPN. With that said, maybe that's enough information for you to know that it may ease your mind some that you may get some of your life back if you are failing at nutrition.
Long-Term TPN Patients
Learning you are going on TPN for a lengthy period of time, or in my case, for life, seems a bit scary at first. I had no idea what to expect except that I would no longer be able to consume food. I have short gut syndrome (short bowel) and because of blockages, I cannot eat food. A lot of people with TPN still get to eat regular food, they just don't get the nutrients because mostly of short bowel, therefore, they have to use total parenteral nutrition. I would rather be able to eat—but that's the way the cookie crumbled for me.
How Long Do You Hook Up to the TPN Bag?
I hook up every night in the evening for 12 hours daily. Some people are fortunate enough to only have to hook up 3 days a week, and some are more unfortunate and have to be infusing 24 hours a day. It depends on your condition and how you are doing with what they start you off with.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Susan on March 24, 2019:
Has anyone ever dealt with TBN for life and frontal lobe damage from a stroke