Alive with HPN: A Life to Adjust To and Making the Most of It

I would like to take a few minutes and talk about TPN, how it has affected my life, and most recently the work I do.

Not only is August Gastroparesis Awareness month (which we are currently raising funds for), but August 3-9 is HPN Awareness Week.  HPN, TPN, what is all of this you might ask?

HPN is often referred to by nutrition professionals interchangeably as total parental nutrition (TPN) or home parental nutrition (HPN).  It is a way for people like myself and other individuals with compromised intestinal function to receive necessary hydration, calories, protein, fat, electrolytes, vitamins, and minerals.  While I can still eat some there are others who can't at all.  For them, home nutrition is a daily lifeline.  My own diet continues to include nutrient dense foods throughout the day but is sadly not enough to make up the amount of calories my body requires to survive.  Since February of 2013 when I received my first PICC line, to now with a central line (placed January 2014), I have infused almost nightly with these essential nutrients.  The TPN bag is placed in a backpack and connected to a pump that drips the fluid at a programmed rate per hour for a period of 12 hours.  Some do less or more depending on their needs.  Currently I do this 4-6 nights/week depending on how my body is doing and if I'm able to take in enough food to have a break.  

Prior to TPN, when my weight was dangerously low, no matter how much I tried to eat, doctors brought this option up and I was scared beyond words.  Thankfully I received an email from a reader (now friend!) who had, for the most part, a good experience with this and used ThriveRx.  I was familiar with this name after watching some of their helpful motility disorder webinars in the past.  ThriveRx is a national nutrition support company that works with others on TPN and/or enteral feeds at home.  I contacted them and spoke at length with a knowledgeable nurse and dietitian who provided me with the confidence and resources I needed to move forward.  

Here is an example of the supplies I use nightly to "hook up."  They arrive at my doorstep once a week so I don't have to worry about picking anything up.  The formula bags and vitamins/minerals go in the fridge while the rest get stored in my cupboard, neatly organized for use.  Washing hands thoroughly and using gloves are necessary steps before putting it together to prevent infection.  Once it is all connected I just carry the backpack around until bedtime and then lay it down next to the bed.  It runs for 12 hrs so typically from 8-8 or 9-9.  If I have to be somewhere in the morning then I can bring some supplies in the pack and disconnect when it's time.  As you can see I have carried this around when traveling.  Here is a picture of when I had my PICC line (and savvy SleekSleeve cover) while traveling and meeting my brother at the airport.  In case you are wondering, no he is not on TPN, that is just a regular backpack for him ;)  Also hiking in Sedona, AZ.  

Is this forever?  I'm not really sure.  What I am sure of is that because of TPN I have been able to maintain a healthy weight and not only survive but really actually thrive!  There are still bad days and I don't expect that to away completely.  But for the most part I am able to be active again and have enjoyed traveling, gardening, yoga, outdoor sports such as hiking, biking and kayaking and help around the house with my husband and 2 dog children.  

Last March I was offered a job with ThriveRx as a Nutrition Consumer Advocate.  This could not have come at a better time.  With my own experience of dealing with nutritional feeds, health coaching and doing as much as I can as an advocate for GP and the Digestive Health Alliance, it was perfect.  Part of the training was held at one of their locations in Cincinnati, OH.  I had the opportunity to not only meet some of the people I have spent the last year and a half talking to but also get a tour of the pharmacy where the TPN and supplies are put together.  The process is quite fascinating, especially with how clean and sterile the space is kept so that our supplies arrive safe and sound.  Even more assurance that I and thousands of others are in good hands.  

Over the last few months I've had the opportunity to help support others new to this lifestyle, work with the team on sharing educational materials, and even travel to San Francisco for an Oley conference on living with intestinal failure.  I learned so much and also met more inspiring folks of all ages thriving on TPN.  Some who have been on it for years without any infections or troubles. One gal, Emma, gave a talk about how GP and TPN have affected her life and her recent ability to begin running marathons again!  I'm looking forward to sharing her personal story here later this week so keep an eye out for that. 

Check out the video below that shares others living well and thriving on HPN.  You can also follow ThriveRx on FB for interesting tidbits and updates everyday this week, including the history of who invented this very unique way of getting nutrition.  If this is something you live with and have questions or want more information feel free to send me an email at storres@thriverx.net.  

If you are in a rough place right now, please don't give up hope. It may take adjusting to a new and unfamiliar lifestyle but take it from me, anything is possible.  

Helpful resources
www.thriverx.net
www.oley.org
www.agmd-gimotility.org