Victory!! On The Same Page!

Content Warning: Mentions of death.

*Additionally, these views on certain medications are solely my own within my health context and should not be reflective of the greater whole.

October 21st, 2022, the big day.

This was the GI appointment I had been preparing for since July.

I was going to make the stance on my health clear, and advocate for myself and my life.

As mentioned by the title above, I think it’s clear that my speech (that I had been working on for weeks) was clearly understood and accepted by my medical team.

I believe the best way to describe how this went, is to use my own words-the words I used for my speech.

Without further ado, here it is:

“I know that you have things that you need to fill out on your computer and that it’s a time crunch since we only have 20 minutes for this appointment, but I have some things I prepared to say to get us on the same page. I even brought a timer with me today to make sure I keep myself under 10 minutes in order to best respect your time.

The first thing, I want to bring you up to speed on what I’ve been doing in the time I haven’t seen you. I’ve been researching TPN and even joined a support group to ask other patients about their experience on TPN to gather more information on it. I even attended two online conferences for parenteral nutrition to learn about up-and-coming research and treatments that are in the process of trials, which I think is something very important to know as we continue to look forward at life with TPN.

Another thing I found interesting when meeting many patients who use TPN, was that some haven’t had line infections and have been on TPN for over 10 years. I’ve also met plenty who have gotten line infections but only got them early on in their process on TPN. I just think this is important to note here, that line infections are not guaranteed with TPN. Of course, line infection risk raises with each year that one remains on TPN, but it’s still not something that is guaranteed (and a lot of other factors can/may play into it).

Going into concerns for my liver enzymes being so elevated while being on TPN (which has thus resolved since changing to lipid and nonlipid bags), I wanted to mention to you a clinical trial being done at [NAME BLOCKED OUT FOR PRIVACY REASONS] which they are looking into entering into phase 2 of clinical trials for a medication that is supposed to help lower liver enzymes and reduce likelihood of PNALD (parenteral nutrition associated liver disease). It’s definitely something that we should be keeping in the forefront of our minds in the next 5 years, since this is something that might become an industry standard medication for those on TPN.

Next, I’ve also been researching gastroparesis as well, since I’ve personally been thinking more and more, that this is a condition I had prior to being put on TPN. I recently got a diagnosis for dysautonomia (a condition I’ve had my whole life but only figured it out now) and my medical team is also looking into diagnosing me with a connective tissue disease and in a lot of research papers there are some links to gastroparesis secondary to conditions like POTS (a form of dysautonomia) and EDS (Ehlers Danlos syndrome; a connective tissue disease).

I wanted to address the extremeness of eating small amounts of food and being sick for weeks at a time- I agree that I haven’t heard of anyone having anything like this before, however, I know one thing to be true, my body is very abnormal and only reacts with extremes to almost everything (you and I both have lots of evidence to support this). I have countless examples through years of evidence proving this statement to be true. So, if we take this information into consideration and compare my body to its past self (as we can see it documented in my journals), it does begin to make sense how it escalated over time (*noting here we are negating the “how”- we do not know how, we know parts of the “why”).

Next, I wanted to discuss my goals since this is something that we’ve never talked about. Next week I’m being moved to a maintenance formula on my TPN. Additionally, I wanted to bring attention to the fact that we only see each other for 20 minutes every 5-6 months, which means in our appointments we don’t have time to address the work that is being done behind the scenes to have me be where I am today. I’ve worked incredibly hard in those interim times to readapt my whole life to adjust and live with TPN, to live alone, go to college, etc. and I’m very proud of the progress and work I’ve done to make it so far. Because of the work I’ve done, I’m very happy with the quality of life I’ve been able to create for myself (body allowing).

On the topic of quality of life, I wanted to have the death conversation with you again, just clarifying that I care about the quality of my life over the duration. I want to let you know that I’m fully aware of everything going on because I’m constantly reminded of how risky the last resort position is. The rest of my medical team is informed of this decision. I’m not afraid of death, but just because I say that, doesn’t mean I’m ignorant towards my care of my central line- I’m just aware that death is a thing that happens to everyone (more so because of my health situation)-not just those on TPN.

Next, I wanted to clarify again why I am choosing to not pursue the trial of enteral nutrition. It absolutely in no way has to do with a fear of food. My first piece of evidence that enteral would fail is that I’ve tried the formula twice and it’s caused me to flare up (aka be immobilized). For conversation’s sake, let’s argue that this evidence isn’t conclusive enough. I have countless amounts of documentation over the past 2 years showing the experiment I conducted with myself of food over periods of time continuing to be unsuccessful. I have tried various consistencies of food over varying amounts over varying durations of time with all experiments ending with the same result- a flare. Through these experiments flares do not occur at a “set” amount of time, they just inevitably will occur over time. I’ve attempted to try and “break” the flare ending pattern and have been unsuccessful every time. Through this I’ve learned my body has developed more extreme ways to get me to stop eating (which again, I’ve tried going against which have resulted in very dangerous consequences) and I now know the flares are a warning signal to stop eating.

But let’s once again say that we’re going to ignore those two pieces of evidence for our conversation’s sake. As you mentioned to me, with your own words last appointment, the enteral feeding (again ignoring the previous facts mentioned) is literally a 50/50-coin toss on success rate. If enteral feeding is unsuccessful, I would’ve undergone surgeries and pain, periods of time of being rehospitalized and rehabilitation, taking more time off from school to then be forced to go back to TPN and the situation I’m already in. So, for me, this current position of things going well in my life and me being comfortable- why would I gamble that away? Why would I be willing to bet everything I’ve built for my life over the year on a 50/50 chance just to make my medical team more comfortable on potentially lowering one risk without knowing what others we could be causing? I want to draw our attention to the fact that I presented this scenario ignoring the evidence I supplied previously. If we take the evidence I presented into account in this scenario, the evidence all shows enteral feeding is highly likely to not work.  So, for me personally, I’m not comfortable taking the 80/20 gamble (and that’s me being generous) on something that has such a low risk of being successful and impacts the whole rest of my life. However, it’s not to say I will never be up to trialing this- I am not sure where I’ll be 5 years from now, but until I personally bring it up, it will never be an option.

This is all I had to bring to the meeting, thank you for providing the space for me to bring these thoughts into the room.”

As per usual when it comes to these appointments, things still got lost in translation, but my main goal for the appointment was accomplished. I spoke my mind very clearly and got my point across.

I went home with a huge smile on my face and was eagerly waiting for the appointment notes to be published so I could review them. I always read all doctor’s appointment notes after every visit so I can see what the doctor is understanding and going away with after each appointment. Oftentimes in my case, the note will have incorrect info on it, which helps me know at the following appointment, what I need to clarify better.

My note was published later that day and attached with it was a very formal legal letter to my primary care showing that I am aware of my risks and remaining on TPN.

I was so thrilled my points came across (as reflected in their notes) and I was crying tears of joy!!

My life finally began that day.

I felt so free.

I no longer had the fear of death threats and other scenarios trying to force me into medications and trials that I wasn’t comfortable doing that would impact my whole life. I was living with a lot of “stops” because I didn’t know what was going to be chosen for me next.

I advocated for myself and was able to give myself the life I deserve!

Here’s to the start of my life!

Read how Emma’s life begins in the story, “Thankful for Iron”.