David and I continue to live in hope for a week in which I manage to avoid any issues for which I do not have an answer. Unfortunately, this past week was not that week.
While I was slowly recovering from the trauma of the previous week (in which I got two tube changes and couldn’t feed for 4 days), I noticed that I was venting some formula through my stomach. The formula goes straight into the jejunum, so it should never appear in my stomach. For some unknown reason, some of the formula is being backwashed from my jejunum to my stomach.
I checked to see if my tube had flipped by putting blue gatorade into my J tube and seeing if there was any blue in when I vented from my G tube. There was not. Fortunately, I happened to have an appointment with my GI on Monday, so I waited to ask him then. He ordered an x-ray to make sure that my tube was not kinked or twisted.
The next day it took me more than a solid hour and a half of phone calls and emails to get the x-ray scheduled. Apparently, no one quite knew what a PEG tube x-ray was even though the order clearly said abdominal plate. Eventually, I got it scheduled for Friday.
Friday morning, I pulled together all of my strength, walked down 5 flights of stairs and walked the half mile to the local hospital along the way. Fortunately, our neighborhood has lots of benches and bus stops, so I was able to rest several times along the way.
When we get to the hospital, the usual outpatient entrance is closed for a press conference. So patients get to walk the extra hundred yards or so to the other entrance. That may not seem like much, but it took everything I had to put one foot in front of the other at that point. And there is not a single seat in front of the hospital. Not even in front of the patient pickup and drop off spots that were occupied by vehicles from the “special” people at the press conference. Heaven forfend someone leaving the hospital might need to sit down while waiting for their ride home.
I managed to drag myself to the further door, the, inside the building, walked back the same extra hundred yards to the elevators to the outpatient testing. I collapsed into the nearest chair as soon as we got into the waiting room. A waiting room with 8 or so people in which no one had their masks up.
Nevertheless, the ill tempered registration woman made us fill out an outdated Covid intake form (including the question “Have you or anyone in your household been out of the US in the last 10 days?”) And they meant it, because even though I had uploaded my vaccination card into their system at a previous appointment when such things still mattered, she insisted on David telling her whether my vaccines were Moderna, Pfizer or J&J. Did I mention that no one had their masks up?
Anyway, I get into the x-ray room and the tech is positioning the x-ray on me and I suggest that she aim the camera a bit higher to get the whole tube in. She ignored me, took the first shot and then came back to adjust the camera because she assumed the doctor wanted an x-ray of the whole tube. Fortunately x-rays are now instantaneous, because I would have been furious if I had had to come back and redo it.
X-ray done and knowing that I still had 5 flights of stairs to walk up, we took a Lyft the half mile home. David almost got hit by one of the drivers of the VIP vehicles occupying the patient pickup and drop off spots when David tried to cross the street to verify that the car there was for us (there was another patient also looking for his Lyft).
I made it home, safe, sound and exhausted. I am actually irritated by how sore my legs were, so I am planning on reinstituting my stair walking regimen so I can build up my endurance.
On Saturday we got the “results” from my x-ray. Although the order was for an x-ray of a PEG tube, the tech decided that the issue was bowel gas, which he deemed to be normal. This morning my doctor looked at the x-ray and declared it to be fine. I still have the issue with the backwashing and he suggested a med adjustment.
This morning I have an appointment with my Registered Dietician because he wants her to weigh in on my nutrition. This is a bullshit appointment because we are going back to her original recommendation based on the higher calorie formula that he vetoed 3 months ago. Nothing has changed. But instead of just going back to her original recommendation, I get to pay for another appointment within the same practice to get the exact same answer. And when this is done we get to submit the exact same order to the supply company and see how long it takes to get that approved.
Also, at least week’s appointment I had the opportunity to ask him, once again, to include Farrell bags in my order. Farrell bags are bags that I can attach to my G tube port and vent into directly instead of having to hold my tube open over a bowl if I don’t want to stand over the sink all day to vent. I had asked him for Farrell bags in past emails. The Registered Dietician who put together the last round of orders included them in her order that she just asked him to sign. He didn’t. He insisted on redoing it his way.
Turns out he just didn’t know what Farrell bags are. Although he had several opportunities to do so, he never bothered looking up what they were and just ignored them when he encountered their mention. He did say to remind him to order them this time. We’ll see how it goes. I am not holding my breath.
In other news, I have found a support organization for rare diseases. The incidence of Gastroparesis diagnoses in the US is 0.16 out of 100,000 people. There have been past efforts at Gastroparesis-specific support organizations, but they have all collapsed into a collection of Facebook Groups. While no one rare disease has enough patients to pull this off on their own, you put us all together and we amount to something.
Anyway, this organization has a free concierge service to help connect patients with doctors, centers of excellence and clinical trials. I already have some trackers on clinical trials for Gastroparesis, but it never hurts to have more feelers out there. I submitted a request and am just waiting to hear back.
They also have a cool program where they connect medical students with people who have rare diseases. The program is designed to help build empathy for the outliers like me by connecting students directly to the patient experience of those of us who fall through the cracks. I submitted an application for that too, but they do not guarantee a match. It all comes down to whether gastroparesis catches a student’s eye.
Not many people know this, but before the pandemic hit, I had gotten frustrated with working in public service in a world where the usual rules no longer applied. As the ADA officer for the City of Plattsburgh and as the leader of Plattsburgh Girls Who Code, I kept running into situations where accessibility was not just ignored, but seemingly deemed irrelevant. So I decided to pivot and shift to working in the field of accessibility.
I mentioned this interest to a friend who introduced me to the International Association of Accessibility Professionals (IAAP) certification process. I rigorous exam assessing one’s knowledge of various kinds of disabilities, accessibility tools and international accessibility laws. I received my certification and had started looking for work when the world shut down.
During the pandemic I looked into getting a certification in Diversity, Equity and Inclusion from Cornell to round out my credentials. But that never happened because I got sick. I almost lost my IAAP certification because I didn’t do all of my continuing education hours, but being the organization they are, they gave me an extension due to my illness.
I mention all of this because I want to be clear that my complaints about accessibility issues do not stem solely from a place of self interest. Rather, they are informed by education and experience. And should I ever be healthy enough to work again, this will have always been the direction I was going.
