After yet another hospitalization at Berkshire Medical Center, this time due to another low potassium level caused by excessive diarrhea from my tube feedings that my body just couldn’t process anymore, Karen set up another follow-up appointment with me. My insurance required me to have follow-up appointments with my doctor after every hospitalization, so I found myself at Karen’s office quite frequently.
“I don’t know how to keep you out of the hospital,” she told me point-blank.
“I don’t really know either,” I admitted. “But this is how it’s been since I was a kid, although I have to admit it has been getting worse the last few years, especially since I developed my brain tumor.”
“I feel like I’m doing something wrong here,” she told me.
“You’re not doing anything wrong,” I tried to assure her, “it’s not you, this has been happening for years, it’s just the nature of my condition.”
“But it shouldn’t be like that,” she insisted. “You deserve better”.
“Well, Dr. Hurrowitz thinks that IVIG will help me but I can’t start IVIG until my electrolytes and hydration status normalizes, and he is saying that that won’t normalize until I get taken off of the tube feeding because what’s happening is that my body is rejecting the tube feeding which is causing me to have diarrhea and vomiting and excess G tube drainage that is then depleting my electrolytes and fluids in my body. I have tried explaining to Dr. Rose and Dr. Hussein that I need to be taken completely off tube feeding and switched to TPN for this reason, but they just won’t listen.” I explained.
Karen wasn’t listening either. She had another plan entirely that she had been thinking about for weeks and I could see the little cogs in her brain turning.
“I’m going to have to make you an appointment with Dr. Hammet so that he can evaluate you and tell me what he thinks the best way to help you is.” She said, completely ignoring everything I had just explained to her about the tube feed and the TPN and the IVIG. “I know you’re not as comfortable with men, but I think we need to do something, otherwise you just have no quality of life, you’re just bouncing in and out of hospitals all of the time.”
The thing was, I did have a quality of life, I had a great quality of life in my mind, and besides, I had never known anything different. Bouncing in and out of hospitals was just routine to me. I just always had to account for the fact that I had to be prepared for a possible medical emergency that would land me in the hospital for a few days to a few weeks.
Aside from that I would go about my life and enjoy Jeff, my best friend. I would enjoy my family. I would enjoy the fact that I had my very own apartment, my very own job as a freelance writer, could take the handicapped bus to the grocery store, my synagogue, the library, the mall, the bookstore, the Lee outlets, or Walmart from the front of the main building and Jeff could ride with me for free as my escort. Chrissy had explained to my mom and I how to get an ID and have my doctor fill out paperwork to make me eligible for the handicapped buses. Then my mom would pay for a whole bunch of tickets when she drove up to visit and I would set up different rides all over Berkshire County.
I enjoyed my time with my caregivers with whom I was developing really close relationships and who genuinely cared for me beyond me just being a job to them, they took me to the art store or Dunkin Donuts for coffee or iced tea or walks near the lake or in the park.
I had a better relationship with my parents now that I wasn’t living with them, we never fought anymore because there really was nothing left to fight about.
Because I had my own income from my writing job with Verblio I could buy stuff for my Build a Bears and entertain myself with my bears for hours on end. I had multiple personal writing projects going on that added a level of meaning to my life. I just didn’t know how to explain to Karen how awesome my life was, and the next thing I knew she was pushing me out to the lobby to make an appointment with Dr. Hammet in two weeks.
I was just shaking my head as I wrote in the appointment. I didn’t know this Dr. Hammet, I had no idea what he was going to say, but I knew Karen had her mind made up so I figured I would just talk to this guy to make her happy.
In the two weeks before the appointment, I just focused on my writing. I had been contacted by a man named Greg, who was a lawyer and a member of our synagogue, he was friends with Laura and knew I was a writer. He needed help editing and writing up a brief for a case he was working on. He offered to pay me $20 an hour, and I immediately accepted and began working on it. After doing some research on legal briefs and what they were supposed to look like, Greg and I discussed the case and he sent me all the paperwork about it. He paid me $20 an hour for working on it and was extremely impressed with the end results, plus I became close friends with Greg in the process. We began studying Torah (the Jewish bible) together once a week and going to Barnes and Noble to dissect scholarly Jewish writing. I even showed him some of my dad’s articles and Greg was fascinated by them. He couldn’t get over how smart my dad was and kept telling me I was just as smart as well.
Jeff hated Greg, and I couldn’t understand why because Greg was a perfectly nice 55-year-old Jewish lawyer, but Jeff kept insisting that Greg was into me. I had to keep explaining to him that the only reason Greg was coming by so often was that I was working for him on the brief and studying with him. Jeff never really understood that. Jackie tried to explain to me that Jeff was jealous of Greg and that Jeff had a crush on me, but I didn’t believe her. Years later Jeff would confirm that he thought Greg was creepy and that he thought Greg was into me and didn’t want Greg to get into a relationship with me
“Greg was the same age as your dad,” he told me years later. “It would have kind of made him like a pedophile if he went out with you. I mean, I know people joke that I’m robbing the cradle, but they’re just joking, Greg is just downright creepy though.” He insisted.
I’m pretty sure Greg was just looking for intellectual company, Pittsfield didn’t exactly support a high level of intellectuals, but I can understand why Jeff was nervous.
“Jeff would tell me if he had a crush on me,” I told Jackie. When she tried to explain to me why Jeff hated Greg and insisted he was into me. Although, somewhere in the very back of my mind, lingering doubts about that were starting to occur. Jeff and I continued to hang out every day. Every waking moment that I was not at the doctor’s, at synagogue, or with Greg, I spent with Jeff.
Jeff kept me laughing and entertained. One day he let loose a bomb of a fart.
“Jeff!” I complained loudly, holding my nose and fanning my face in exaggeration.
“Oh that?” he said, “that wasn’t a fart. I don’t fart, I Febreeze, that was Fresh Cotton Linen scent.”
“If that’s Fresh Cotton Linen Scent then I want to have a talk with whoever is washing your clothes!” I exclaimed before we both started laughing.
From then on, anytime he farted we had a running joke, I would ask what scent he just Febreezed and he would tell me things like, “Peach Blossom Wave,” or Strawberry Sensation Blast”.
Then one day, I accidentally let one loose, and Jeff immediately made a big show of holding his own nose.
“See you don’t Febreeze, Becca, and that was more than a fart. That was a weapon of mass destruction.” He paused for a second and then pretended his phone was ringing, he made a big show of picking up his phone and saying it was the US Army, he then pretended to have a one-sided conversation with the US Army, making a big show of it, and then dramatically pretended to hang up the phone and turned to look at me.
“The US army just called me up, they want to use you as a weapon, they’re going to pick you up in a helicopter, lower you down over Iraq and tell you to fire away with one of your farts, and then they’ll quickly pull you up. They’re a little concerned that some civilians may be critically injured by your fart blast, but it’s a risk that they’re going to have to take.” Jeff told me quite straight-faced.
“Jeff, you’re such a jerk, my farts aren’t nearly as bad as your so-called ‘Rose Petal on a Breeze’ Febreezing,” I told him through my laughter.
“Oh, I beg to differ,” he insisted, “look, I think the yellow paint is starting to peel off the wall!”
“That’s because you put tape right there and then peeled it off,” I told him giggling.
“Hmmm, a likely story,” he said, and then we both started laughing really hard.
In the two weeks after my appointment with Karen, Jeff kept me so happy and entertained, along with my being so busy with my writing job for Greg and my writing job for Verblio, that I was almost able to forget about my appointment with Dr. Hammet. Things were going so well for me, that I didn’t imagine the appointment could be that bad anyway. So, as I drove up for my appointment, I was busy on my phone scanning articles I’d submitted for typos and getting ready to submit them. Then I spent some time flipping through Facebook. The whole drive down, I didn’t really stress at all.
The chair van pulled into the parking lot of the doctor’s office, dropped the lift, and Jeremy, the driver who went to high school with Jeff and had long dark brown hair he wore in a ponytail and a goatee and was very talkative and super friendly, got out of the front seat, came around, opened the side doors to the lift and came in to unfasten the locks that held my chair in place for the ride.
“Ready to go inside?” he asked me.
“Yup,” I told him, and he pushed me into the building toward the receptionist. I checked myself in and then Jeremy pushed me into the waiting room and parked me in a very visible area, near the tropical fish tank and a shelf with children’s picture books and puzzles so that when they came out to call me, they would be able to see me and come get me if I had trouble getting my legs to work well enough to push myself.
Dr. Hammet was running a little bit late. That was the first part of the appointment that got my stress up.
My appointment was scheduled for 1:45 PM and his medical assistant didn’t come out to get me until 2:10. No one even bothered to tell me that he was running late, so I was just sitting there stressing, wondering why no one had called me in yet and wondering if there was something wrong with the appointment.
Finally, the medical assistant called my name.
“I’m over here,” I called back.
She just stood there.
“I’m over here,” I repeated.
She continued to just stand there.
Then she repeated my name.
“Yes, I’m Rebecca Pava,” I told her.
“Well, are you coming?” she asked.
“I need you to help me,” I explained feeling rather dumbfounded. I know some people in wheelchairs can push themselves around, and at that point in my life sometimes I could, but it was inconsistent, it all depended on how well the messages were getting sent from my misfiring brain, and it was only on days when I had enough energy and strength. On that particular day, I had neither. But if you work in a hospital or doctor’s office or any health care setting and see a person in a manual wheelchair and you’re calling their name and they’re acknowledging you but not moving, chances are they need your help to move them. It doesn’t really take rocket science to figure this out.
That was the second part of the appointment that elevated my stress levels.
Once the clueless medical assistant finally realized that her disabled patient needed assistance getting in the room, she pushed me back into an exam room.
“The doctor will be in soon,” she told me, “Do you have any new medications or changes in your health history since your last visit with Karen two weeks ago?” she asked me.
“No, everything’s the same since then,” I told her as she wrapped a pediatric blood pressure cuff around my arm and scanned my forehead with a thermometer then slipped a pulse oximeter onto my finger.
“Your vital signs look good,” she told me. “Heart rates a little high, blood pressure and oxygen are a little low, but compared to your averages they look good.’
“Well, that’s good,” I said.
After the medical assistant left the room, that’s when my anxiety began to kick up. I tried to use skills I’d used in therapy over the years to talk myself down.
You’ve never even met the guy. He’s probably a really nice man and a good doctor. You’ll just explain to him that this is your norm and how it’s always been and I’m sure he’ll understand. I can even bring up the TPN issue, as my primary care provider it’s his job to get everyone on the same page, maybe this will be a really good thing, maybe this will be the catalyst that fixes everything for me. All I have to do is be open and honest and explain everything to him as clearly as possible and give him the contact information to all of my doctors.
I had almost talked myself into believing that everything was going to be okay, when Dr. Hammet walked in. He was a short heavy-set man with gray hair and a permanent scowl. He had a bunch of papers in his hand, probably about me, and he was more busy looking at them than he was at me.
“You are on way too many medications for such a young woman,” was the first thing he said, and I immediately knew this was not going to go well.
First of all, my doctors were constantly going through all my meds trying to pull away ones that we thought were not 100% absolutely essential, and second of all while yes, I was a young woman chronologically, I had worse health than most 90-year-old women and my age should not be a factor in determining how many medications I take. My conditions themselves, and the most appropriate treatments for them, should be that factor.
Any doctor that says your age should be a factor in how many medications you are on, is obviously not a competent doctor. Any chronic illness warrior can tell you that right off of the bat. You learn that quickly as you go through multiple doctors trying to find one that can actually take care of your unique needs properly. Many less than optimal doctors try to say, “Oh you’re too young to be that sick”, that is also an immediate red flag that they are not a good doctor. Chronic illness has no age range.
“We need to get you off as many of these meds as we can,” Dr. Hammet told me. He still hadn’t made eye contact with me or even really looked up at me from the papers in his hands. Another huge red flag.
“My doctors have been working with me a really long time to figure out what meds will work for me and which ones I should and shouldn’t be on,” I tried to explain to him. “They only have me on the ones that are absolutely essential for my care.’
“You are on way too many meds, there is no way that these are all essential to your care,” Dr. Hammet said.
“I have multiple very complex conditions, I require multiple meds because of that.”
“No one needs to be on this many meds. Being on this many meds is going to kill you. If you don’t get off a good majority of these meds I don’t think you are going to live much longer, I would say I wouldn’t think you would live longer than two more years or so if you don’t get off a good chunk of these meds. There is definitely such thing as being on too many meds, and you are a prime example of it. It’s called polypharmacy”
Just to prove a point, this appointment happened in June of 2016, as I am writing these words now, it is June of 2021. Five years have passed and I am on just as many meds and I am still very much alive. So there, Dr. Hammet.
I had to admit it, back then, his words scared me a little bit. Were there any truth to them, I wondered? Was I really on too many meds? Were the meds really going to kill me within the next two years? Those thoughts freaked me out.
But then the more I thought of it the more I figured that he was just trying to scare me, Mass General Hospital was one of the top hospitals in the country, even the world, and they were very aware of what my medications were, as well as my doctors at Baystate Medical Center, and my other doctors. No one else ever told me that my meds were going to kill me. I made a mental note to bring up the issue of me being on so many meds with my doctors at Mass General and then tried to steel myself against the attacks by this Dr. Hammet.
“My other doctors feel I am on an appropriate combination of medications,” I informed him.
“If you’re on the right meds then why do you keep bouncing in and out of the emergency room and getting admitted to the hospital all of the time?” asked Dr. Hammet.
“That’s been happening ever since I first got sick at age ten,” I explained to him. “It’s just part of living with my disease.”
“No one should be living like that,” Dr. Hammet insisted. “There’s something wrong when you’re bouncing in and out of the hospital all of the time like you are, and we as your doctors have to do something about that.”
I could feel all my muscles tensing up, I knew whatever plan was going to come out of his mouth next was going to be a lousy plan and I wasn’t going to like it as best. At worst it was going to be a deadly plan.
“What I want to do,” Dr. Hammet began as he sat down in a black spinning office chair at his computer desk that was covered in files. He set my file down and looked straight at me for the first time. I squirmed under the glare of his cloudy gray eyes. “Is to take you off of all of your medications and IV fluids for two weeks, and then slowly add them back in so that we can see which medications and treatments are helping you the most and which ones you don’t really need.”
I was stunned that he would even suggest anything that insane. Maybe for someone less medically fragile the plan would make sense. However, I couldn’t survive being off my IV fluids for a few hours, let alone two weeks!
“How would I get my hydration, dextrose, electrolytes, and vitamins?” I asked him incredulously.
“Well, we would provide that through your J tube,” he explained.
“I can barely tolerate the 10 ml an hour of half-strength Peptamen Prebio through my J tube, and that’s with getting IV Zofran four times a day and IV Phenergan three times a day,” I told him.
“Well maybe if you’re not getting all those other crappy pills pushed through your system constantly you’ll be less nauseous,” he tried to tell me.
“My meds aren’t the only thing making me nauseated, I’m nauseated because I have gastroparesis and total digestive tract failure due to my Small Fiber Autonomic Polyneuropathy. If you stop my IVs and increase my J tube feeds I’ll be a million times more nauseated and I won’t even be able to absorb the tube feed, I’ll get diarrhea, vomiting, reflux the feedings back up and out my G tube bag and get bowel obstructions that can be deadly.” I tried to explain to him.
“Who told you that?” he asked me.
“Well, I’ve had multiple gastric emptying studies done over the last fourteen years, all coming back showing severe gastroparesis, I’ve had esophageal and intestinal tests come back showing dysmotility, which combined with the stomach dysmotility, the hiatal hernia, the malabsorption, and the GERD means that I have total digestive tract failure. The nerve injury team at Massachusetts General Hospital has explained that this is all due to my Small Fiber Autonomic Polyneuropathy. We’ve recently had to majorly reduce my tube feeds and dilute them to half strength because they were making me so nauseated, giving me diarrhea, making me vomit, and they were refluxing up and out my G tube bag and giving me bowel obstructions as well as throwing my electrolytes off. That situation put me in the hospital twice.” I told him.
“If you’re not willing to do a med holiday for two weeks, then I don’t think I feel comfortable having you continue at this practice,” Dr. Hammet told me. “You’re too much of a liability.”
I felt my heart go thud. What was I going to do if I didn’t have a primary care doctor? Who was going to prescribe all my medications, give me referrals to specialists? Write for my PCA and visiting nurse orders? Write my pain med orders? Write my tube feed orders?
I couldn’t stay with Dr. Hammet’s practice if he was going to do a two-week med holiday. I wouldn’t survive even the first day.
What was I going to do?
Dr. Hammet must have realized that I didn’t know what to make of this situation, so he explained himself further.
“I can give you 30 days worth of prescriptions and orders to last until you can get in with a new primary care doctor. I can also give you a list of doctors that your insurance company covers in the area if you choose to go to a different provider, but I really don’t think that would be a wise choice. You won’t live much longer on this many medications with this many hospitalizations. Something has to give.” He said.
I stayed frozen, with my hand halfway in mid-air waiting for the sheet of paper he was handing me of lists of doctors in the area that accepted MassHealth and were accepting new patients.
I wouldn’t survive a med holiday for two weeks. That’s what it came down to. Maybe I wouldn’t be able to live much longer on this many meds, maybe he was right, maybe I did have too many hospitalizations, maybe he really could help me. But what it came down to, was that the only way he was offering to help was if I did a med holiday for two weeks first, and I wouldn’t survive that.
Eventually, I got my hand to move enough to accept the paper, and I signed myself out of their office, had my care transferred over to a Dr. Horf in North Adams, and got my ride back to Side By Side Assisted Living under the care of a new primary care doctor.