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.  

Patients Have Power: Breakthrough Research and Clinical Trials

Disclosure: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research. Please forward and share this blog post. 

Manny will be 9 in a few weeks. Never thought that would happen. Afterall, at 11 months we were told he wouldn’t live to see his first birthday.

We went home from that hospitalization with a DNR (Do Not Resuscitate) order, something parents should never have to complete and an appointment for hospice.

Babies shouldn’t die. But they do.

To our amazement, Manny turned out to be a fighter. In the past 8 years, he’s fought sepsis (more than once), multiple complicated surgeries, painful procedures and unspeakable loss. Yet Manny is resilient. And so is the human spirit. His will to live, not just be alive but to LIVE, is beyond most humans I’ve ever met. 

If he’d died 8 years ago, he’d have never been to Disney World or Universal Studios. He’d have missed going on an Alaskan Cruise where he saw countless humpback whales. He’d have missed going to the Colorado Rockies (twice) where he would meet a moose, elk and fox in the wild.

And without Manny, the world would have missed out on one of the most amazing spirits that has ever been born. Funny. Talented. Gifted. All in a body that is continuing to fail him.

Manny was born with an ultra-rare form of Congenital Muscular Dystrophy – LAMA2 (formerly known as Merosin Deficient Congenital Muscular Dystrophy). When we made the trek from Tampa, Florida to Bethesda, MD to the NIH, the doctors said he is the most severe form of the disease they’d ever seen. And that was at the age of 2. 

People who meet Manny have two wildly differing experiences with him. Some people meet Manny and can see past his disabilities to HIM. And for those people, he will often comment, “He noticed me.” Manny will reward those people well with gifts of song or joke or silly story. He has the uncanny ability to get anyone to do anything for him almost instantly. I’ve seen many grown people suddenly finding themselves in a dance battle or playing monster trucks with him. One man was so moved by meeting Manny and his resilient spirit that he gifted our whole family (8 people) a Disney World annual pass. All because Manny was just being himself.

Then there are those who look at his outside often immediately feel sorry for him. He’s in a wheelchair. He’s drooling. He needs help moving his arms and legs. His hands are turning inwards. All his joints are stiffening.  He needs bipap to breathe. He’s hooked to machines to feed him. His neck cannot move. His eyes are stuck gazing forward. All because he lacks the laminin in the muscles. 

And it's not just the patient themselves who are affected. There's a whole family trying to be strong together. We have become part of a "club" where no one wants to belong. 

This is a progressive disorder with no known cure or treatment. We just lose him piece by piece.  We are keenly aware at how any little respiratory bug could be “the one” which triumphs over him. We are torn between keeping him safe in a proverbial bubble and letting him live despite the risk. We choose the latter. And live he does!

It’s not until I see video of him from years gone by that I notice just how profound his losses are sometimes.  And yet I’ve rarely seen Manny ever feel sorry for himself. It happens. But it’s quick and justified. 

Recently, he’s been talking about Heaven. A lot. About how he will get to run and play and eat and carry heavy things. These conversations are hard and freeing at the same time. 

Truth is: Manny has an incurable disease. There are researchers around the world working on clinical trials to find a cure or a treatment. They are working around the clock to understand the intricacies of the human body. They are unlocking the DNA codes and mysteries. I’m grateful for brilliant minds, keen observations and dedicated patience it takes to do this kind of work. 

I'm also aware that the cure won’t likely come within Manny’s lifetime. It’s why I am so dedicated to answering every survey that comes my way. We participate in every trial we possibly can. We travel far and wide for testing. We are registered with the relevant databases. We encourage others to do the same. Upon his death, we will donate some more tissue to be studied. 

Patients often feel powerless with incurable diseases. But Patients Have Power. Maybe not for our loved ones sometimes, but for those to come. I dream of “One day” … there will be a cure.

These are sobering thoughts. They’re not ones I ever share with anyone. But when I saw the www.clarahealth.com topic on Breakthrough Research and Clinical Trials, I knew I had to share his story. Because Breakthrough Research and Clinicial Trials aren’t sexy. They aren’t done for fun. But they are also not done in vain.  They’re done for people to have cures and better lives.

They’re done for people like Manny.