A Lingering Legacy, and Continued Hope
Updated: Nov 13, 2020
Hello all, below you will find a series of blog posts regarding a recent experience I had due to the discovery of a legacy issue of Crohn's that I must address. I'm happy to announce that I am doing great, and now I am aware that 16 years of active disease can leave a mark on a person. My hope is that we can expand access to bioelectronic medicine to patients as soon as possible so that patients can thrive — without undergoing decades of failed treatments like I did (and so many others do).
This is a five-part series that will address that lingering legacy as well as the hope for what lies ahead: in the first two posts I'll cover my recent experience, and from there, will spend the next three posts discussing my experience as a patient advocate, what lies ahead in research, and the lessons I've learned. Stay tuned to my Facebook page and I'll update you as to when a new post has been added to this page.
Happy Holidays to all, and here's to our shared bright future: may the next decade that we are about to enter into be one of healing so more and more patients can thrive from the advances in bioelectronic medicine.
It Hurts to Breathe and I’ve Got Night Sweats: Apparently, That’s Not Normal.
For the last two years, I have soaked and basked in the sunlight of remission. I took a break from regular doctors’ appointments and lab work. I was tired of being poked and prodded, and I loved the normalcy of being able to simply exist. It was nice to take that break, because for fifteen years, I was on nearly two dozen biologics and immunosuppressants, had almost twenty colonoscopies, half a dozen hospitalizations, triple the amount of CT scans than a person should safely have in one lifetime, and enough bloodwork to fill up a small aquarium. Meanwhile, most normal, healthy people avoid going to the doctors. For the last two years, it was really wonderful to feel so good that I could join that club.
In that time period, I’ve been learning what it’s like to feel normal – to distinguish between what’s normal pain and what’s problematic pain. Healthy people like to joke about how things start to hurt after the age of 30. I always just kind of nodded and listened to their complaints, not being able to relate to it. I’m on the cusp of turning 31 and have been wondering about when I’d feel those normal aches and pains of aging that I hear of.
In the last month, I’ve learned that ‘cures’ or therapies of any kind is not a zero-sum game. I’ve discovered that a patient can be free of active-disease and in remission, but the fact of the matter is that there are legacy problems from decades when that was not the case – for fifteen years, none of the treatments that I tried helped me, and because of that, I ended up with legacy problems that I’ve just learned of that I’d like to share with you.
This does not mean that new therapies, specifically vagus nerve stimulation (bioelectronic medicine) doesn’t work – it simply means that, believe it or not, ladies and gentlemen, fifteen years of active disease leaves a mark. For me, that mark is that I am unable to absorb iron effectively, which left me in a severe iron deficiency and dangerously low hemoglobin. There has been research that shows that the combination of the two can cause dangerous blood clots – and I ended up with multiple bilateral pulmonary embolisms.
Earlier this fall, on a Friday night, I curled up on the oversized chair in my living room with some takeout, my favorite sweatpants, and my dogs, with a plan of catching up on some chick flicks. My husband was away for a guys’ weekend, salmon fishing up in Pulaski, NY. As I sat on the couch with some tofu curry and prepared to watch Julia Roberts continuously break Hugh Grants’ heart in Notting Hill, I felt a sharp pain hit my left rib, and at that moment, began to struggle to take a deep breath, and moving around much sent sharp pains into my chest.
It was weird – I’d never felt a pain like that before, but I had spent the day moving furniture around and organizing my closets, and I thought to myself, ah, this is what normal people are talking about – this is a result of me being 30. I overdid it today, and now it hurts.
I decided that this called for a margarita on the rocks with extra salt – surely, tequila would subside some of the sharp pain. Back to my movie.
I carried on the weekend normally: on Saturday I went to help my sister move into her new apartment and spent that evening visiting with my grandma. It still hurt to breathe. I took extra strength Tylenol.
On Sunday, I felt the exact same sharp pain hit my right rib and spiked a fever of almost 102 degrees. I stayed in bed most of the day and thought maybe it wasn’t a pulled muscle, but perhaps pneumonia or the flu? Are these the normal aches and pains of those ailments? I felt pretty terrible, so that afternoon, I dragged myself out of bed and drove to urgent care. There, they did a chest x-ray, ruled out pneumonia, ordered some antibiotics and said to go home and rest.
Sean came home that evening; we ordered takeout, I put the heating pad on my back, we watched a movie, I took more Tylenol, and went to bed. I woke up hours later drenched in sweat, struggling to breathe, and stubbornly laying there cursing out my body for getting me sick with whatever this was. My upcoming work week was busy, and I didn’t have time for this.
Sean woke up at 6 am and by then, the pain was bad enough that we decided to go to the ER.
There, they did blood work and found that my hemoglobin was low – it was a 5, when normal should be 12 – and my iron was equally grim. My platelets were also elevated. They did a CT scan of my chest and found that I had multiple bilateral pulmonary embolisms.
I spent the following six days in the hospital getting a few blood transfusions, an iron infusion, and blood thinners.
The hematology team did a complete work up on me and everything came back normal and found that the only thing that provoked the embolisms was the combination of low iron and low hemoglobin.
I learned that even though my Crohn’s disease is in remission, I still have long-term legacy damage from fifteen years of active disease that left me with an inability to properly absorb iron from food.
This was a lesson for me that while my vagus nerve implant is remarkable in its ability to put me into remission and allow me to live a life that is free of pain, disease symptoms, and side effects from medication, it is not a time machine.
My particular device cannot undo the damage of what fifteen years of failed medications and active disease caused.
My hope is that, sooner than later, more patients have access to bioelectronic medicine so that their disease doesn’t progress to the point where they have long-term legacy damage and are treated effectively before it gets to that point.
Patients need more options for treatment, and clearly, the two dozen drugs available today aren’t effective enough.
The Toradol Troubles
When we got my blood work back while I was in the emergency room, it showed that my inflammatory markers were all normal – my white blood cell count looked great, as did my CRP and sedimentation rate.
The only problems in my labs were the low iron, low hemoglobin, and elevated platelets – all pointing in the direction of the pulmonary embolisms, confirmed by the CT scan.
While there, the doctor asked me if I was in pain – hell yes, I responded. Multiple pulmonary embolisms hurt. It hurt to lay down, it hurt to breathe more than shallow breaths, and it hurt to move.
“I can give you Toradol, if you’d like.” the ER doctor said.
“Isn’t that an NSAID?” I asked.
“In the past, NSAIDs have upset my Crohn’s disease.” I responded.
“This won’t; it goes in via IV, so it isn’t metabolized in your digestive tract,” he said.
I hesitated. I knew he was wrong. I should have turned it down, but I was in pain, and I hadn’t had Crohn’s symptoms in two years, so I thought maybe I’d be okay, and I didn’t want to argue with him.
So, I agreed to the Toradol.
Nothing happened after that first dose – whereas, several years ago, a couple Advil sent me spiraling into a colitis flare that lasted for months.
OK, I thought. Maybe it’s okay for me to take now.
Nights with pulmonary embolisms are torture. Lying flat on your back is impossible; I propped myself up with pillows and elevated the back of the hospital bed into almost a seated position. Even so, if we didn’t stay ahead of it, I would wake up around midnight in tears and quite audibly in pain. By then, the doctor had ordered morphine, but I tried to avoid it when I thought I could get by without it – and was reminded of a lesson that I knew years ago: staying ahead of the pain is the key to the pain not getting out of control.
The second night there, I was due for the next dose of morphine, but I was okay – my pain was only about a level 5. I thought I could wait a couple of hours when I knew it’d be around an 8. So, I waited.
A couple hours passed, the pain began to creep up, and then it hit hard, and the morphine was too late to the party. I sobbed uncontrollably from the pain. I have an extremely high tolerance for pain, but with so many pulmonary embolisms that the nurse told me they ‘couldn’t even count them’, I couldn’t ‘Grit Directory’ my way through this.
Toradol was ordered again in hopes that the combination would help – I hesitated again, and I told the nurse to express my concerns to the nighttime doc on the floor. She did, and he said I’d be fine.
Two hours later, I ended up in the bathroom with bleeding and diarrhea.
The next day, my blood was drawn, and my white cell count, sed rate, and CRP all elevated above normal – when they had been completely normal the day before.
In the few weeks that followed, I was in and out of the bathroom several times a day.
My gastroenterologist and I decided to do a one-week prednisone taper, and luckily, it got things back under control quickly. I am back to being medication free, only relying on my vagus nerve implant.
(As well as, obviously, Lovenox shots for the blood clots. The embolisms have dissolved, but I will likely be on them for a couple more months.)
I learned an important lesson here: I should not have been afraid to be the ‘difficult patient.’ I could have turned down the Toradol when it was offered, and if it became an argument, so be it – but that brief argument would have saved me a few weeks of diarrhea.
The Patient Voice and the Future of Devices
I am not the only person with a vagus nerve implant controlling an inflammatory disease. There were others in my own trial, as well as patients in two rheumatoid arthritis trials, who have shown great success and are thriving.
However, right now I am the only patient currently speaking publicly about my experience. Being the only one who is vocal about her success with this device can be a little daunting. With a greater number of people speaking about it, the vision of this new field of medicine will become clearer.
When I first began to feel the effects of VNS and how wonderful I felt and how much it changed my life, I decided that I was going to do everything in my power to get this treatment widely available to more patients who are continuing to suffer. At the time, I didn’t know what that would look like, but I knew that I had to do something to spread the word to patients about bioelectronic medicine, do my part to raise money to advance research and access to trials, and get this FDA approved.
When I began sharing my story publicly, and since becoming a patient advocate, I knew that would mean sharing everything – and all the glorious gory details. I’ll never forget how it felt to be asked on CBS2 news by Dr. Max Gomez about diarrhea; that was the moment that I inwardly laughed and thought about how interesting and unique my life’s path would be – how many people have spoken about diarrhea to the entire tri-state area on the evening news? I realize that most people wouldn’t share nearly as much as I did and continue to, but I knew that my story needed to be told. This field of medicine will change the trajectory of public health as we know it, and to accomplish that as quickly as possible, it needs patient voices sharing their experience.
My implant has rid me of the symptoms of my disease as well as enabled mucosal healing in my colon. I can finally live a pain-free life without juggling different medicines and endless doctors’ visits and procedures. However, my particular device is unable to change the destruction of the past. I now know that I don’t metabolize iron effectively; having multiple pulmonary embolisms was a hell of a wake-up call to that.
This new field is filled with a lot of new – not just in how doctors practice medicine, but as patients, how we learn to care for ourselves in a world post-active disease.
For the many patients that will eventually benefit from bioelectronic medicine, it’s necessary that you know that even though you may go into remission, you may still have legacy damage to deal with. For me, I don’t absorb iron. I don’t know what it will look like for other patients, but I do know that bioelectronic medicine will allow patients to thrive.
I also know that the sooner bioelectronic medicine is available to patients, the less legacy damage they will have to combat later.
Further, as I mentioned earlier, my device is just the beginning. When discussing the particulars of my device, I often refer to it as ‘The Zack Morris Phone.’ My device is an off-the-shelf device that has been used to treat epilepsy for the last twenty years. To a small extent, it can be customized in terms of milliamp frequency and duration, but it is not nearly as targeted as the devices that will become available in the coming years that are specifically targeting certain inflammatory markers. My device simply sends a few signals down to my spleen and generically tells it to stop over-producing inflammation, and it does a great job of that. However, it does not reverse the clock – I may never be able to metabolize iron on my own.
But, I’ll take my Zack Morris Phone any day of the week, and twice on Sunday, because it has been the only treatment that has put my Crohn’s disease and inflammatory arthritis into remission. This off-the-shelf stimulator has given me a life I never dreamed would be possible at my age.
The future of devices will be that much more extraordinary. Even now, the new device being used in the SetPoint trials is a microregulator that has shown to require less frequency and duration, as well as a reversal of bone erosions in people with rheumatoid arthritis. (Even my 'Zack Morris phone' has helped to reverse my osteoporosis!)
The device being developed at the Feinstein Institutes is remarkable; when it is fully engineered, it will be no larger than the size of my pinky nail and will be customized to the patient’s exact needs. Timir Datta’s lab is creating the device itself, while Theo Zanos’ lab is decoding neural signals of the vagus nerve in order to customize Timir’s device to be tailored to a patient’s exact needs. The vagus nerve is made up of more than 80,000 fibers, each acting as a neural signal, and each responsible for a different mechanism. So far, Theo’s lab has determined which fiber is responsible for the immune system’s production of the inflammatory cytokines TNF-a and IL-1, as well as glucose. This device will be able to identify what each patient’s needs are on a daily basis, and customize the signals sent down the vagus nerve based on those needs – and even prevent new symptoms from occurring by combatting them via neural signaling before they present themselves to the patient.
The future for devices and bioelectronic medicine is so bright – and while I’m grateful for my device, it is not the end-all, be-all, of this new field of medicine. The best is still yet to come, and I eagerly await the day when millions of patients have the relief they've dreamed of.
"See? She broke for a minute. It doesn't work. Take the drugs."
When I returned from Amsterdam, all bright-eyed and bushy-tailed, I was thrilled to report back to my rheumatologist at the time that my clinical trial worked. She, however, wasn’t as excited as I was. The gist was this: don’t get too excited, this may just be the placebo effect.
I was hurt and offended. I made that clear to her, and never saw her again.
Maybe I acted in haste and could’ve used it as an opportunity for her to continue to treat me and learn of a new field, but I didn’t want to. I’m a Scots-Irish woman from the mountains, and I hold a wicked grudge. I was at an event recently where Judy Collins said that her father, an Irishman, once told her that in her family, ‘We’ve got Irish Alzheimer’s; we forget everything except the grudges.’
Anyway, from the get-go, even while in Amsterdam, I knew there’d be pushback on this new field of medicine, but I didn’t think it’d be from doctors. I expected it from pharmaceutical companies: biologics used to treat inflammatory diseases can cost upward of $20,000 per treatment every four to eight weeks. In 2013, rheumatoid arthritis treatments cost the US economy $304 billion. There is money to be made in keeping people sick, and as much as I wish that was me being a cynical conspiracy theorist, it’s simply a hard fact.
Yet, I couldn’t understand the pushback from doctors. They see sick patients every day; they see patients that are failing drugs, or they see patients that may end up with their diseases managed, but side effects that end up equally as crippling. Why, I wondered, would they not want to have another option for desperate patients?
Sadly, my rheumatologist at the time wasn’t the first or the last to behave this way. It’s come from many more doctors from all specialty backgrounds, and it’s been disappointing.
Over the decades that bioelectronic medicine has been researched, a significant number of pharmaceutical representatives and executives, doctors, and even scientists that are not in this particular field of research, have been attempting to justify their position that drugs are the end-all, be-all of treating disease, and that the nervous system and immune system do not interact with each other, or do not do so as intimately as we now know that they do.
Medicine has been practiced the same way for the last century, and somewhere along the way, in the last fifty years, our best and brightest have lost their zest for discovery. It’s almost as though once we landed on the moon and discovered the vaccine for polio, that we decided that’s enough for humanity, that’s where the greatness ends. Our society has become engaged to the status quo and mediocrity, has decided to court complacency, and has asked that anyone who does otherwise simply leave them alone – leave them to be in their living rooms with their TV dinners, pull the shades down, don’t question us – just leave us alone.
And when they aren’t left alone, instead of becoming intrigued with possibility, many collectively become enraged at the questioning of their conformity. Further, we are living in the ‘A-ha!’ era of waiting for an opportunity to misread a situation and call it a failure.
Bioelectronic medicine works, that’s not up for debate anymore. It’s not a bunch of patients benefitting from ‘the placebo effect.’ In pre-clinical trials, mice were anesthetized, and their inflammatory markers measured. While under anesthesia, their vagus nerve was stimulated, and while still under anesthesia, their inflammatory markers measured again – the inflammation dropped significantly. So, that begs the question: are unconscious mice self-aware enough to have the psychological capability of creating their own placebo effect?
What’s more, clinical trials for biologics (like Remicade, Enbrel, etc.) only require that 50% of the trial population see a 20% reduction in disease activity in order for the drug to be considered effective.
Vagus nerve stimulation, on the other hand, has seen more than 60% of the trial population see either remission or significant reduction in their disease activity by more than 150 points on disease activity scores.
I have long-term damage because of fifteen years of active disease while being treated by almost two dozen biologics and immunosuppressants that were not only ineffective, but so deeply ineffective that my disease progressed to the point where I have permanent damage. Even so, an iron infusion every once in a while is quite pleasant compared to the life that I lived prior to having a vagus nerve implant. I’ll pump iron any day of the week and twice on Sunday if it means that I get to live the way I do now instead of the way I did then – crippled by pain, completely inflamed, and utterly disabled.
The pharmaceutical companies, doctors, and scientists that have so staunchly denied the science will use this as an opportunity to clap their hands and say that bioelectronic medicine is doesn’t work – patting themselves on the backs for the status quo that many would prefer because of nothing more than its familiarity.
I, on the other hand, will now work that much harder to expand access to patients so that patients currently suffering from diseases that aren’t seeing relief from drugs will have an option that will allow them to thrive and to not progress to the point of having permanent damage from their disease.
This experience taught me a few things, the chief of which being that just because I feel great, doesn’t mean I get to avoid going to the doctors. Perhaps I don’t have to go as much as I once did all those years ago – but, I still need check-ups and lab work to make sure that all is functioning effectively.
I’ve used the metaphor before of my body being a car, and my vagus nerve stimulator being a part of the engine. The vagus nerve is the crankshaft that connects the rods (the nerves) to the pistons (different organs in the body). My VNS device is the flywheel, which allows inertia to keep the crankshaft turning smoothly during the times when power is not being applied.
Now, we know that with all of that, my body also requires an oil change every now and then – and my oil change comes in the form of an iron infusion from time to time.
I may be Vagus Nerve Girl, but that doesn’t qualify me to be invincible or immortal, and I am still prone to requiring tune-ups.
The focus continues to be on the mission: to advance research to continue to treat and cure disease, and to expand access to patients so that millions more can benefit from this revolutionary field of medicine.