HPN Awareness Week

This week is HPN (or TPN) Awareness Week. I have been participating (or at least reading) on The Oley Foundation's facebook page. They have been posting a new question each day. I wanted to share the questions so far along with some of the answers just to give some of you an idea of what it means to be dependent on HPN.

1. What you want people to know about IV nutrition or your routines. Are there misconceptions you’d like to address?

"That those on HPN are super heros - 365 days of the year with no time off for good behavior - every daily plan has to take into account hook-up and un-hook - yet we constantly see smiling faces who make this work for them - they are not slowed down or deterred and continue life that most take for granted."

 

"That preparing TPN is a non-negotiable part of my day. I'm getting pretty good at planning around it and doing it on the go, but that doesn't change the fact that my son's TPN must be running at 6 p.m. every day, no matter what else anyone else is doing. I will refuse phone calls, be late or leave early, leave cleaning undone,turn down invitations and otherwise put other things aside to make sure that this is done. I don't do it to be rude."

 

"I resisted my Dr.'s discussion of TPN for a long time. When it became an undeniable fact that I needed nutritional support due to intestinal failure I 'gave' in. In my mind TPN was an 'end of life' therapy, not the 'life saving' therapy it really is. I gained 40 lbs. in the first two months...and felt better than I had in years. I will always need this amazing therapy and don't feel hard done by this. I'm just thankful for a new lease on life. Thank you Oley for your help and support."  - This post made me cry. This is exactly how I felt about TPN and was so against Owen getting it. Now that he has been on it for a month, I am sure that it is saving his life. It is making him healthy enough to fight off the little things and giving him a chance to grow.  

2. Can you describe a positive experience you have had because of HPN, and what made it positive?

 

"My daughter has so much more energy when she is receiving TPN....her skin is brighter, she is happier, she has gained some weight, she isn't dehydrated. Has made a big difference for us!"

"We learned to know what is most important in life and not fret the small stuff. But over all the best thing is to have met friends and caring doctors that otehrwise we would not have ever known. We have formed friendships that will last forever but also our kids have made friends and together who better to know the ups and downs we go through then thiose who walk the same journey"

3. Can you describe a negative experience that you have had because of HPN and what should have happened to prevent that?

"I was sent home on HPN without having the proper medical personal in place to oversee the nutrition aspect of it all. My PC contacted Boston and thankfully some accepted to be in charge of the formula. Also my first visiting nurse group had tooooo many patients and I wasn't receiving the proper care. We replaced them!! So many issues... not enough space!!!"

 "Line infections, and problems with homecare with threats to provision........"

Owen "all hooked up"

This is what he does when I say, "Show me your picc line."

what a cutie :)