Confessions: Why I NOW Attend Conferences

 

By Beth Gore, Executive Director of the Oley Foundation

Have you ever pondered this?
Conferences are basically telling people “Don’t talk to strangers” and “Don’t give information to people on the internet” to “come meet them in person instead!”

Confession 1: some of my best friends and confidants were strangers I found online and then met at a conference. For decades, I was a speaker at conferences. Many times I was the top-billed or keynote speaker. There’s something electric about standing in front of a crowd and making them laugh, cry, learn and be inspired. I’d talk to a million people, visit the exhibit hall and go home. Brain full and feet tired.

Confession 2:  unless I was a paid speaker, I didn’t attend conferences. Ever. I just didn’t get the purpose. I would often look at the list of topics and think “that’s a webinar I can get from the comfort of my own house”. And “attending is expensive and taking time away from my family why bother?” I missed the point entirely.

For a long time.
It took me working for an organization that out on an annual conference (read: I was forced to go) to finally get it. And now as an Executive Director of an organization, I find myself trying to convince people to take a chance and “just go”. It’s that initial inertia we all have to overcome.

For our organization, there are extra barriers. We represent a group of patients who are quite medically complex, often very ill and barely coping with day to day life health wise. Then throw in it’s an expensive life we live, with many things not covered by insurance. And then we ask them to travel across the country. It’s both hard and expensive. And yet we believe it’ll be worth it.

Click HERE to learn more about Oley, the Nutrition Support community. Basically - Tube Feeding and IV Nutrition. 

 So here’s what I wish I understood sooner in my own journey:

1.     Thought leaders of the discipline are there, in the flesh, and ready to exchange ideas. People you’ve just read about in articles are accessible and getting coffee from the same pot.

2.     Best practices or the latest research are often shared. It can take a decade or more to get from cutting-edge ideas to practice. So hearing it at a conference is putting me often 10 years or more ahead of the current practice and literature. Especially in the rare disease and complex care space, this could be life-saving information.

3.     Innovative products/services are all in one place. What’s the latest and greatest gadget? What’s the product I’ve heard about feel like? I can ask questions and maybe offer suggestions.

4.     Shared journey means sitting at a lunch table or taking an elevator ride with people who are experiencing a similar journey as mine. In my regular life, I often feel the only proverbial salmon swimming upstream. But at a conference, I’m with “my people”. Little to no explanation needed, they just “get it”. It’s empowering and weirdly comforting to know I’m not alone.

5.     Collective expertise is at my fingertips. As a newbie to a journey, I can tap into and absorb this. As an experienced person, I’m able to pass along the lessons learned. Maybe those scars were worth something to someone else’s journey and just maybe I can lessen their scars.

In the end, even all of these things boil down to one thing: a sense of belonging. I’m able to feel and see I’m part of something bigger: COMMUNITY.

I muster the strength, close my eyes and go on blind faith that I’ll find the fuel I need to continue to fight the fight for another year. That I will find the people I’m going to need for the next year when I’m weary from the journey.

If you’re ever on the fence if the money and effort and time are worth it, especially if you feel alone and isolated and weary from the fight, take a chance. If you’re anything like me, your only regret will be that you didn’t do this sooner.

To learn more about our upcoming conference: https://oley2024.vfairs.com/en/

The Oley Foundation is a 501c3 non-profit home nutrition therapy community and advocacy group.
Mission: To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.
Vision: Oley envisions a world where patients are united, supported and empowered to thrive on home nutrition support.

No Such Thing as an Easy Procedure

10 month old manny, sick with pneumonia

5/14/2010

A decade ago, Manny was admitted to the hospital. We’d only had him home 49 days. He had double pneumonia. Within minutes of being there, he was assigned doctors, nurses and techs that I still know and who still care for him to this day. That admission was rough as we were giving a terrifying diagnosis (which turned out to be a misdiagnosis) and prognosis of less than a month to live. 

10 month old Manny with pneumonia 

In the decade between, we have had amazing and horrifying medical experiences. We’ve almost lost him countless times. And yet, so far, we keep getting to take him home with us. Each time, I learn more. Each time, he and I both get a bit more PTSD triggers.

5/14/20

A decade later. To the day. Ironically, we were headed to the hospital. This time he was healthy. This is just for a tiny procedure. Should have been an hour tops and done. Most people don’t even need sedation for it.

What’s the procedure? And what is it for? And is it necessary?

The procedure: He has a hole (stoma) in his skin that does directly into his stomach. He currently has what is called a G-Tube. (G for Gastric). It’s used for feeding, hydration, medicines and venting things that shouldn’t be in the stomach. For Manny, we only use it for venting. They were replacing the G-Tube with a GJ- Tube. G stands for gastric and J stands for Jejunum (A specific part of the small intestines). For people who have severe gastroparesis (stomach won’t empty), putting food into the stomach will just sit there. So they put the food directly into the small bowel.

A G tube can be placed at home. I’ve done it many times. Pop the old one out. Pop the new one in. 5 minutes tops. But a GJ has to be placed in Interventional Radiology (IR) because the J portion has to be threaded through the stomach into the small bowel. They confirm the path and tip location with fluoroscopy. This part should only take 20-40 minutes depending on anatomy. It’s not painful, just feels weird and some pressure. 

G-Tube 

Manny is on Parenteral Nutrition (Sometimes called TPN). This goes through his veins. It can be hard on the liver and there can be other major complications (such as sepsis). He has been very fortunate with little to no complications associated. His liver numbers are perfect. So it’s been a life-saver for him! He’s on this because he has severe gastroparesis and feeds cannot go into his stomach. And he has severe angioedema (a type of allergic swelling) when food goes into his body, even into his bowel. It’s been life threatening numerous times. Even with antihistamines, steroids, etc. He’s “drowning” in his own secretions. 

J-tube 

But GIs want to periodically trial him on feeds again. So we have to try. I’ve put this off for almost 3 years. (They want to try yearly.) We were quite overdue and she was insisting we try again. Step one is to get this tube. 

Problems we thought we would incur (because in the past we did):

1     1. Manny freaks out emotionally. He tries but he can’t keep it together. They have to give him Versed. He doesn’t like it or the effects. This time, he did GREAT! He didn’t need it. He stayed calm and brave. He was nervous but not freaking out. The Child Life person was able to go back with him and show a video he’d picked out on his ipad. He counted down from 5 and was asleep by 3 she said.

2      2. The wrong tube. Several times we have been told what tube and size would be placed only to come out and find it’s not right. This time, everyone was on their game! The right type and size of tube.

3      3. Waking up. He is combative when he wakes. (Likely the versed.) He has even threatened to bomb the hospital and is angry with everyone. Once it wears off, he’s a sweetheart again. This time, he didn’t experience this.

4   4. The team forgetting he has a severe allergy to a cleaning agent. It’s on his bracelet. It’s documented in his record. But it’s such a common cleaner they often do it by rote. It causes major troubles for him for weeks after. This time, they remembered to use the right cleaner!

Waiting in day hospital 

What I was NOT prepared for: 

•         The anesthesiologist would ignore our conversation and verbal plan for sedation
•         He would lose airway
•         Codes would be called for him
•         It would take multiple experienced experts to keep him alive
•         Anesthesiologist would be deeply apologetic for deviating from the plan
•         She would be telling me a moment by moment account of the horrors
•         She would admit that a key phrase I’d told her likely saved his life
•         We almost lost him 

Brave boy headed back to the procedure

Some key things that went right:

        

•     The plan was for him to go from day hospital to IR back to day hospital. While he was under, I was allowed to stay in the IR waiting room or go back to his day hospital room. Thankfully, I chose to grab a bite and go back to his room. The seats are more comfy. I could take off my covid mask. I talked to a friend on the phone. It was quiet and peaceful in there. Had I stayed in the waiting room, I’d have seen and heard all the commotion. I’d have known for 2 hours that horrors were happening but not been able to do anything about it! While part of me wishes I could have been praying, I truly think blissfully unaware was better in this situation.
•         Instead of bringing him back to the day hospital, they took him to PACU which is where they take the kids after surgery for a higher level of observation. THAT’s the moment I knew something had gone really wrong. This is where the anesthesiologist met me before we went back to see him to tell me all the ways it went wrong.
•         In PACU, he got a specific nurse – Suzanne. I’ve known her for about 12 years – prior to knowing Manny. She has a son with the same type of cleft lip/palate as Zoe has. She knows me as a Mom. She knows Manny as a patient. She was able to start advocating for him even before I could get to him. She made dozens of excellent calls. She and I think VERY much alike when it comes to care for Manny! It would turn out we needed her several times.
•         Once I got back to see him, he was struggling to breathe. Oxygen wasn’t enough. They had to set him up on BiPAP with oxygen bleed in. This was the right call.
•         The Surgical team wanted us to stay the night. Suzanne advocated for us to go home if he would stabilize. Afterall, we have bipap, oxygen and suction at home.
•         He eventually stopped bleeding.
•         He started breathing better on bipap.
•         Then he started to have blood sugar issues (being off TPN for too long. Afterall, we thought we would be home in a few hours, not 12!) And Suzanne and I discussed options and got what he needed.
•         Daddy packed up the TPN, bipap, oxygen and brought it to us for the ride home. Therefore we got discharged. The team said, “If you weren’t ICU mom, I’d never even consider this!”

PACU

After effects:

·        Manny continued to have struggles breathing off and on until bedtime. Bipap was what he needed. Good night sleep and today, he’s holding his own with breath.

·        He was blissfully unaware of all the chaos! He simply told me last night, “My throat hurts”. I told him it was from the tube that went down his throat. What I didn’t tell him is that even STIIL (more than 24 hours later), his throat is still weeping blood. The anesthesiologist called it “friable”. We don’t know why.

·        He has the start of a junky cough. Likely aspiration during the ordeal.

·        He coughs and says, “Oh no! They gave me Corona!” LOL

Sadly, there will be a next time he needs a procedure done. Things I have learned from this one will include:

• 1.       This time, I’d talked to the anesthesiologist and we had a plan. Where SHE says it went off tracks is she thought she had options. She tried those options. From light sedation to several other things to finally using a glidescope to get intubated. She said that even though I had TOLD her to please us the glidescope, she didn’t. She says to ONLY consent to this and no other procedure options. To insist. To put my foot down and say it clearly so no one will ever go through this again. This was NOT an inexperienced doctor. And she needed help of MULTIPLE experienced doctors. And it could have been avoided. All by doing what I’d said at first. She readily admits that. She will also write it in his chart in big letters. But basically told me to not agree to anything unless I get written and verbal confirmation they won’t even attempt anything else. 
  
• 2.      All of this was for a procedure that I didn’t even want in the first place. Doctors think it’s no biggie. But this put his life in jeopardy for a trial of something that MIGHT help him a tiny bit. The risk/benefit ratio shifted significantly in my mind yesterday. I will think long and hard before I ever put him under for ANYTHING. I will be able to stand my ground (kindly, of course) with ammunition of “This is potentially life threatening to sedate him”.

Bottom line is:

We left our home at 8:30 am and arrived 12 hours later for an “easy” procedure.
We almost didn’t get to bring him home.
We did.
I’m grateful.

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.

It's Not Just a Meal

You call into a brand newly opened, highly recommended restaurant to get a reservation. The person on the other end of the line is rude. She abruptly tells you you’re giving her the information wrong. She’s flippant and bothered to be talking with you. But because you’ve heard it’s a great chef with amazing food, you forage ahead and make the reservation. Afterall, maybe she was just having an “off” day.

You show up to the restaurant and the hostess is aloof, cold and unwelcoming.  Once you finally get a seat, the waitstaff is almost angry that you’re there. They seem “put out” to even serve you.

By the time the food comes out, do you even CARE anymore how it tastes? 

Do you think the chef has ANY idea how the front of the house is giving HIM a bad reputation?

And what can be done about it? You could complain, give a poor tip, put a bad review on Yelp, not go again, tell your friends not to bother.

Bottom line: We would not put up with it. And we would likely take our business elsewhere.

But what if this same scenario was about healthcare? This scenario wasn’t made up. I just changed the terms to reflect restaurant and not doctor.

In business: “The customer is always right”.  (Which I don't believe is true.)
In healthcare: “The patient is always wrong”. (Or so it seems.)

As a mother to 6 children with various special needs (one very complex) and a health concern or two of my own, this is a scenario with which I am all too familiar. I’m a semi-intelligent person who is proactive and engaged in the healthcare system. I even work for a healthcare organization.  (Shout out to AVA – the Association for Vascular Access. If ever you get an IV, don’t let them stick you more than 2 times before getting a more qualified specialist and consider vein visualization technology. It exists. Veins are important and you’re not a pin cushion. But I digress.)

I often wonder how the average person navigates through the healthcare system. It’s exhausting!

Last week I was to schedule with a new doctor. I called my primary care physician (PCP) to get a referral. They said I was calling too soon and to call back a week ahead. I did. Different person said, call back at 72 hours. I did. Different person said I was calling too late and that they couldn’t possibly get a referral out that soon and I’d have to reschedule the appointment (that I’d waited weeks to get). Do these people all get different training manuals? And each was POSITIVE she was telling me “the way it is”!

Now once I did get hold of the person and they agreed to help me, she started with “What’s the doctor’s name?” And I told her the group name. “Must have the doctor name or insurance will bill you as out of network and we aren’t responsible.” I tell her that I’m a new patient to them and they told me I would be seen by the first available doctor. (audible grumbles).

“Why are you seeing this doctor?” I tell her it’s because my PCP (her boss) told me to go to this group for follow up to a CT result. “That’s not something I can code. Why are you going?” I start to tell her a few basic details. “I don’t need all the details.” I was wishing I could have a stat script called in for a “Chill out pill”. Either she or I could take it … it didn’t matter. I guarantee my PCP has no clue her front office staff is this rude or inconsistent in dolling out policy as if it’s the Magna Carta.

 

Or this week, I showed up to a specialist for a follow up. They have no record of my appointment. They look at their computer and tell me the appointment had been for that time but for the day before. I pull out the appointment slip given at the last appointment. I was there on the date/time of the slip. She looked and said, “We changed it” and proceeded to tell me I owed the $25 for a no-show fee. Not sure how I could be responsible for their change and for not telling me. (I nicely declined to pay.) Whole thing had to get rescheduled as the doctor wasn’t in that day.

Or the whole notion of asking for our health history but not actually believing anything we say. I understand patients are often not forthcoming or are not accurate in their health history or even compliant with things such as meds. I’m certain that must be exhausting. But on the other hand, there are highly engaged and reliable patients who keep medical records due to OCD.

One example of that is my son was going to his not usual hospital for a sedated procedure. I handed the anesthesiologist my (abbreviated) record from our usual hospital about his troubles with anesthesia. He dismissed me.  A bit later, they had to come get me as my son was having horrible troubles with airway. They knocked out several teeth, did emergency airway, left bruising, etc. All to save his life. (For which I am grateful.) However, I’m also frustrated because this was completely avoidable. The reaction he had is exactly what was in his record. Why weren’t my hospital records believed?

Next issue: Informed consent. This is a tricky concept. Can a patient every TRULY be informed? Can they truly understand the risks, benefits and alternatives? Probably not. Afterall, we didn’t go to medical school. At the same time, it’s an important step. And not one to be glossed over lightly. I have a friend currently experiencing a much longer recovery time than was told. She was told about 3 days. It’s going on 2 months. And while this is still in the realm of normal, she wasn’t even told this was a possibility. And she’s a nurse!

I have to imagine it’s exhausting to a medical professional to explain over and over and over a procedure and its risks/benefits. There must be explanation fatigue. Afterall, they have likely told 1000’s of patients. But for THIS patient? It’s their first time. And they deserve the best explanation, just like it was their mother or sister or daughter. How to do this? I have no clue. I’m simply saying that patient safety is also tied to patients understanding.

And before you think I’m down on the whole profession – I’m not. There are doctors and front office staff who are amazing! They truly understand patient perspective. They educate and inform. They collaborate and partner with the patient to help promote the best quality of life. Unfortunately, these are becoming fewer and further in between in my experience.

My advice: If you work for a healthcare organization, do your best to provide good, basic customer service. If you are a patient, be kind as you advocate for yourself and your needs. But get your needs met.

This isn’t easy. But it’s not just a meal. It’s not just a restaurant we can choose to go to or not. It’s our health. And that’s worth the effort to figure this out.

PTSD or is it CTSD? Current Traumatic Stress Disorder

PTSD: Post Traumatic Stress Disorder.
If you google PTSD, the first words to pop up are, "anxiety and flashbacks triggered by a traumatic event". Below is an image of some of the common symptoms.

However, there's basically nothing about what I'd like to call CTSD: Current Traumatic Stress Disorder. That's what medically fragile patients and families deal with. The triggers are CURRENTLY happening. Not in the past, but NOW. They're not imaginary things triggering flashbacks. The events inducing stress are happening NOW, PLUS triggering the PTSD.

In PTSD, say a person who had experienced a violent break-in gun point robbery in their home. Maybe they heard breaking glass first. So say they're in a restaurant one day and a glass breaks. They're right back in that moment. It's not real. But it triggers all the old feelings instantly transporting them back through flashbacks.

But if that same person had a second violent break in, it would be the PTSD from the first one but also the terror from the current one.

Now imagine that over and over for YEARS with no end in sight.

That. Manny lives there.

Now as you let that sink in, I'll add one more layer. My layer.

Back to my break in analogy. While the violence is happening, I help the robber hold down my kid. I welcome him in. I tell my kid to stay calm through the pain and unpleasant and terrifying events.

So I hear breaking glass, I know he'll be terrified and hurt. And I know I'll have to try to keep him calm throughout. I know I'll try to convince him it's for his own good. And he won't believe me. In fact he'll lie and tell me he's not in pain or his tube is not broken or his blistered skin is better. He'll beg me not to let the robber in this time.

Repeat. Multiple times a day. Multiple times a year. For years. With no end in sight.

In fact, there's a metaphorical robber in my house right now. We are waiting for a call of when the next part of the trauma will begin. Likely Monday or Tuesday. Until then, I'm trying to keep the robber hidden. But Manny knows he's there. We both try to pretend he's not.

And my brain goes to how to better protect my kid and house for the next one after that. Could I make better decisions so he'll not end up here again so soon? It's why I've become OCD in so many areas of life. Every time I find a new vulnerable place, I board it up.

I'll add that first responders (military, police, firefighters) etc are also greatly affected. It's under recognized and under supported. They are PTSD/CTSD as well. And probably a few other very challenging jobs I've not even considered. Different details, same effect.

And when one family member suffers from this, the whole family suffers.

I could go on and on explaining this concept. For those living it, they're like "preach it sistah!" And for those who don't live it, be thankful you can't begin to truly grasp this concept.

Bottom line: if you know a family who lives in these type of trenches, pray harder for them. They're probably barely surviving. They're in survival mode and don't know how to reach out and ask for help. They are too busy fending off the past, present and future bad guys to figure out what they need. So be there for them. Give them space but let them know you're there. A meal. A card. A gift card. Help clean their house. Babysit. Pray. And expect nothing in return. Do it for them.

Most of these families have lost most of their friends over time. They are busy trying to get through one day at a time. Doesn't make for fun conversations over coffee at Starbucks. We aren't much fun at a party. We have very few shallow things to discuss and little patience to do so. We are traumatized. (That's the T in PTSD).

And the longer it goes, the more we realize this will never end. THIS is our new normal. And how do we make the best life from here? We continue to get up every day and make a stab at our new normal. Aware that every day, we've lost a little bit more of it.

And while it's not a hopeless place... It's a terrifying place. Those who know me know I laugh way more than I cry. I have a continual smile on my face. I'm hopeful. I'm optimistic. I CHOOSE to focus on the good rather than the bad. Daily. I force myself to see the hope and light and love and outright miracles that surround me daily. I feel the support. I know we are loved. I feel the prayers. I live there.

In fact I live there so much, most people probably had no clue Manny and I also live in the land of CTSD as well.

And so do thousands of others.

Today my goal is to raise awareness. Those of us living with PTSD or CTSD are among us. They are messy and hard to love sometimes but love them anyway. Identify those people in your life who maybe living it. Reach out to them. You may be their only lifeline.

1 Million Pokes Campaign #1MPokes

I  have a confession. 

As a mother, one of my most important jobs is to protect my child. So when I fail in that area, it's particularly burdensome. Yet I have failed to protect my son countless times. The guilt is overwhelming.

Imagine a scenario in which a bad guy enters your home and starts to physically hurt your child. Your very first instinct is to stop the injury, even if it causes harm to yourself. Can you even imagine just standing there and not stopping it, doing nothing? Or even worse, can you picture a scenario in which you actually participate by restraining your child while the bad guy hurts your child and you tell your child to stop crying? Sometimes repeatedly? Over several hours? 

I have.

We adopted Manny when he was 9 months old and 6 weeks later, he ended up in the hospital needing IV fluids. This started his very long and complicated history with IV needle sticks or “pokes” as many kids call them. It was not unusual for it to take several people attempting, multiple pokes and 3-4 hours to get an IV in.

Early on we learned  to value the Vascular Access Specialists who could almost always get his IV started on the first try.

Some of Manny's first words were learned during these poke sessions. I would stand there and try to comfort him, distract him and calm him.  But I could not protect him.


Clinicians, meaning well, will often try to comfort Manny by saying, “Mama is right here.” I understand what they are trying to convey. However, what Manny heard was, “Mama is letting this happen.” In fact, because Manny is frequently in the hospital and in need of an IV, he started getting quite angry with me. Afterall, I LET them do this to him. Repeatedly.

Sometimes they are short staffed and actually ask me to help hold him down. I cannot begin to describe the conflicted feelings. But mostly I feel helpless.

Yes, I am well aware that the poke is necessary to get blood for tests, to give fluids and to give IV medicines.  But it's nearly impossible to explain to a baby, toddler or child that “this is for your own good.” And it doesn't alleviate the guilt I feel.

Unlike my earlier hypothetical scenario, I'm highly aware these clinicians aren't “bad guys,” they are doing their job and acting in the best interest of my son. But that's where the differences end.

Because this has been so traumatic for Manny and for me, I started learning how I could best advocate for him. I've even discovered a wonderful organization called “Association for Vascular Access” or AVA. 

This organization certifies Vascular Access Specialists to become premiere specialists who ensure the right device is placed for the right patient by the right clinician at the right time. They work with manufacturers of these devices to develop and produce the best products.


This Fall, AVA's Pediatric division is rolling out  “A Million Pokes Saved” campaign. #1MPokes

Research: Create a vision for future research to contribute evidence that is currently lacking in pediatric vascular access.

Special Skills and Knowledge: Determine the groundwork of education and special skills required to preserve children's precious vasculature and how to share that knowledge with others.

Tools: Generate tools that help build skills needed to implement change.

Partnership: Develop collaborative relationships with institutions to raise awareness and champion change.

I might not be able to prevent Manny from getting an IV and “pokes” in the future. But maybe, AVA can help him and the millions just like him have less. That speaks to my mama's heart.