Irony ... I'm not a fan

Irony ...

• Son starts on IV nutrition (AKA TPN) in Shands hospital in Gainesville) 
• Mom becomes avid advocate for all things vascular access and nutrition support. (That means tube feed or IV nutrition). 
• 2017 She starts working as a national patient advocate for AVA. (Association for Vascular Access)
• 2017 She wins the ASPEN advocacy award. (This is the American Society for Parenteral and Enteral Nutrition - in other words, tube feeds and IV nutrition. This is the society for the professionals in the field.) 
• She's been working with professional groups to help with a registry to track central lines (the main way IV nutrition gets into the body). 
• October 1, 2018 She becomes the President of the Oley Foundation (home nutrition support for patients)
• Meanwhile, she starts to develop intestinal failure and TPN is suggested by a Shands Gainesville GI. (TPN is another name for IV nutrition.) 
• She eventually agrees there’s no other option.
• She seeks for her local GI to start her on TPN. He refuses to do ANY nutrition support for any patients.
• She is on hunt for someone to help her.
• She has access to the best of the best but no one can help her locally and she’s too sick to travel.
• All this happens during malnutrition awareness week.  

Are you getting the picture? I am likely one of the most educated non-clinical patient advocates for this arena of healthcare. I have textbook signs screaming "Malnutrition" with red flags everywhere. And I can't find someone in my state to hear me. 

I am working on a speech. It's going to be called, "Can You Hear Me Now?" This will be me in a suit (how I normally present) sharing some of the national patient advocacy things I've done and progress we've made.  Then at some point, I will put on a patient gown on top of my suit and pretend the microphone cuts out. I'll keep mouthing like I'm talking but with no sound. At some point, the audience will say something to me to let me know the mic has cut out. And I'll ask, "How come I can't be heard when I'm seen only as a patient?" 

The reality is stark. I'm a trusted, respected member of the team in ALL circumstances.  UNLESS I am the patient. What the heck?? 

I understand all too well about the power disparity in healthcare. It's between the senior doctor and the junior. It's between two departments. Or two specialties. It's between nurse and physician. Or between clinician and patient. And everyone always assumes in the doctor/patient relationship, it's on the part of the patient. I'm sure that's part of it.  

But even when the patient (such as myself) is an accomplished, knowledgeable, articulate, motivated and involved patient ... she can't always be HEARD by the clinician. I even started wondering - maybe it's because there isn't a place to "put" that data.  Sure, there's no place in the EMR (Electronic Medical Record - also sometimes called the EHR for Electronic Health Record). Literally, there's no place in most to include any notes from the patient on relevant details such as history, complications, thoughts, etc.  But beyond that, there's seemingly no place to put the patient data in the provider's brain either! I'm not sure why that is.  

Like in my case, I started losing weight unintentionally. I was never overweight according to the BMI (Body Mass Index - a height to weight ratio) but let's just say I felt I could have lost a few pounds.  Let's be specific.  I am 5'11". I weighed 171 at my heaviest. That's at the tip top of the BMI scale. I feel most comfortable around 155-160 range. I have been able to maintain that weight easily without dieting most of my life. If I'd start to creep up, I'd just eat a tiny bit less or move a tiny bit more and voila! Back in my happy range.  Even at my wedding weight at age 25, I was 150 as I'd accidentally lost a few pounds (likely the jitters) right before the wedding. This was my weight in college. Etc. Basically this is the range I'd been in my entire adult life. (I'm nearly 50.) 

So when I started losing the weight, I noticed immediately. First 10 were like, "Phew". Next 10 were like, "OK, enough now". Then I couldn't keep weight on no matter how hard I was trying. Started stuffing nutrition in my body and carefully counting my calories to ensure I was getting enough. 

According to these charts, they start to take note at a 10% body weight loss. (I got up to 25%)
Or they should notice if the BMI goes below 18.5 (I am currently 17.4)

I'm sharing this with the doctors about how I am having a more difficult time doing my daily activity. Then it became virtual bed rest. 

Next it was my heart beat is being affected.
I can't keep anything down. 

etc etc 

And I still can't get heard! 

The stats alone should be SCREAMING at them. 

But I ask ... who is looking? 

Apparently no one. 

And when I tell them my concerns, they seemingly look at me with these eyes that are like, "OK, but that's someone else's job." I literally told my primary care physician "I'm very concerned about my nutritional status. Seems there is no one taking notice. Who should I talk to about this?" She tells me, "I'm sure someone is looking. I'll be right back." She left the room and literally never came back. That was June. 

Now before you jump to the conclusion that I'm a difficult patient ... I'll stop you right there. I've studied what types of people get that reputation. TRUST ME, I'm not.  I'm kind but forthright and direct but also try not to step on their proverbial toes. I try to be the team player that I am when I'm in the advocacy role. Yet nada! It's like the Twilight Zone. 

Now circle back to the first part.  

If I, an educated, healthcare-literate person with tons of resources at my disposal can't get heard, what chance do the other patients have? 

Not sure how to change this. But trust me, it's my next mission. 

Just as soon as I get some nutrition.