I hope you are doing great! Staying hydrated, out of the hospital, having fun and such!
It’s been a hot minute since I started a series called Choices, but I’d really like to jump back into that! Plus, I’ve still got about a million photos I took at the grocery store because where else can you get perfect images that demonstrate the zillion choices we have in our lives?
In my first post, I talked on some tips and questions I ask myself when I’m looking at the doctors in my life. Now I’d like to take a look at the tips and questions I like to ask myself when I’m choosing the company who mixes and delivers my TPN and supplies.
In my experience, when I was first put on TPN, I’d gone through years and years of doctors telling me I had one of the strangest cases they’d ever seen. That they’d never seen anyone like me before. So when it came time to be sent home with a super foreign new normal with TPN, I never even thought that there could be another company out there who could provide me with the same therapy and supplies as the one I was sent home from the hospital with. If I was so weird and so out of the norm, why would there be any sort of market for this that would give me other options?
I feel like this scenario happens all too often. Patient is started on TPN in the hospital. Hospital case manager organizes a home health company to send patient home on TPN with (typically one that’s easiest for them to work with, not necessarily with the patient’s needs in mind.) Patient goes home without being told that there are dozens of options for pharmacies who can provide their TPN services who specialize in all different things and have different strengths and weaknesses.
All of that to say, I want to help YOU be educated and let you know that you have options and you have choices in who provides your care. Not only because it’s important to realize you have options, but because the choices you make can really effect the ease and quality of your life.
Here are the things I ask myself:
1) Is my TPN infusion pharmacy able to ship outside of my state?
Who out there likes to travel a little? Who out there has wanted to go on a little trip and had to fly with all of your TPN for the week? Or who had to go through the whole ordeal of switching to another pharmacy in the state you were traveling to because your pharmacy was unable to ship outside of the state you live in?
This is one of the most frustrating things in my opinion. And ultimately one of the main reasons I did end up switching companies after about 8 years. I realized this wasn’t the way it had to be, found someone who was able to ship to me wherever I was traveling, and I was ready to switch on over! I’m super passionate about this piece, and would be absolutely up for talking to anyone about their frustrations in traveling on TPN. Sometimes a company can help it not be so complicated.
2) Is my TPN infusion pharmacy listening to me? Are they sending me what I need?
Some infusion pharmacies will skimp you on the supplies you need. I’ve even had someone tell me they didn’t carry the product I needed, and were instead sending me a product I was highly allergic to. The tricky part was that they’d been sending me the product that worked for my body for months.
While there are limitations due to insurance, and sometimes things happen where a pharmacy can run out of something, there needs to be thorough communication about your needs between you and your pharmacy. After all, they are the ones getting you through the day to day of living with TPN.
3) Does my TPN infusion pharmacy specialize in both TPN and my condition?
There are plenty of pharmacies who can make TPN. But lots of them also compound a broad spectrum of therapies. I’m really into the idea of a company who specializes in just TPN. This means their nurses, dietitians, and pharmacists all know the ins and outs of life on TPN and they are always up to date on nearly everything in the TPN world.
4) Does my TPN infusion pharmacy offer the tools I need to manage my care on my own?
One of the most frustrating things to me is waiting around for a home health nurse. In my experience (before meeting the amazing Nurse Pat, you’ll hear about her one day soon!) most home health nursing agencies don’t understand that having a waiting window of 8 A.M. and 5 P.M. for a weekly nurse visit is not compatible with a human who is out living their life. And the stress of not knowing if it’ll be the same nurse who you know you trust, or some new person who tries to blow on your freshly cleaned site to try to “dry it faster.” I dealt with that for years. I’d finally had enough, and moved to a company who encourages self care for those who are able to meet the standards and who are taught proper technique. I am now able to do all of my dressing changes and lab draws on my own schedule. Also with the peace of mind that I’ve done it to the best of my thoroughly educated abilities and my risk for infection has decreased significantly since I’ve stopped with home health agency nurses.
I feel that these few questions are huge in helping to navigate which TPN company would work best for you and your life. But they only just scratch the surface in things to be considered in making this choice. The companies are all so different and so worth exploring! I’d absolutely love to talk to any and all of you about my personal experience in finding a company that has changed my life for the better! Feel free to direct message me on Instagram, find me on Facebook, or even send in a message here on the Contact page!