So yeah, my GI is pissed off and lying to me (poorly), but I am feeling relatively good thanks to my support team. My palliative nurse is doing a good job managing my pain and nausea, Mary, my Complex Care Coordinator is working her magic and David been able to shift his attention to enjoying more fun things.
When I say that my pain is managed, I mean specifically, as long as I am not ingesting anything orally or via tube. This is a boon, because previously, I was moaning and crying in pain much of the time. But now, I am only varying degrees of uncomfortable when I do things like flush, feed or drink. And I only have pain when I increase the rate of my feed.
The pain management does allow me to get at least of liter of hydration a day with reasonable comfort (the variance is mostly meds coming up to full effectiveness or beginning to wear off). This we now know, thanks to a kind and communicative on-call doctor, is enough to keep me out of the ED. Which alone, has done wonders to help my healing
I have tried, twice, to increase the rate of my feed, and failed both times. My GI just increased my pain meds, although I cannot start on the increase yet because it is a controlled substance and I increased that pain med too recently. I am perfectly ok with this delay, because I am already at my peak tolerance for the side effects. And honestly, I don’t expect it will make much of a difference at this point. I think it is time to stop just throwing meds at the problem and to start trying to figure out what is going on. And increase my nutrition. That one is huge.
I have been stuck at 800 calories a day for about a month now. I do try to supplement my feed as much as possible. I only drink juice. I supplement my hydration with Ben & Jerry’s. I eat cotton candy. This last one is cool and was a tip passed on to me by a friend who was on parenteral nutrition (IV) for almost 2 decades. Your stomach doesn’t see cotton candy as food. It is just spun sugar and super easy to digest. It is just like swallowing saliva.
Well, that is mostly true. Lots of swallowing, including the hyper-salivation that comes with nausea, triggers my digestive system pain. So, I even have limits to my cotton candy. But nevertheless, it remains the easiest thing for me to ingest.
My point being, that I am doing everything in my power to increase my caloric intake. But even Ben & Jerry’s calories are negligible in 30-60ml increments. The bottom line is that I am starving and have been doing so for a month now.
I have lost 18lbs to date. Which is exactly how much I gained from my feeding tube. I mentioned this to my GI in terms of asking whether it was now time to consider TPN (IV feeding). Before you read his response, you should know that the subject of the email he was responding to was “Significant weight loss” and that in that very same email, I had made clear that my hydration had stabilized and I was solely concerned about my nutrition:
“As far as parenteral (IV) nutrition – if things have not improved at all over the past few days, and you are not making much urine at all, then it can be considered. It would likely need initiation as an inpatient, in order to get the hardware, care and delivery of feeds initiated, etc. Not likely a quick process. Willing?”
Clearly he needs to improve his reading comprehension skills. He is also clearly pretty damn dead set again getting me my nutrition. He had scheduled me for a follow-up appointment on July 20th. Mary called the office and pushed back. Mary is now friendly with the staff and even they agreed that a July 20th appointment was absurd. I now have an appointment on June 8th. Given how firm he was about ending my last appointment on time and leaving questions unanswered, and my brain being what it is these days, David is already strategizing the conversation so I control the appointment, not the GI. But I remain pessimistic that the doctor will do anything useful.
That leaves me hanging on until July 11th, when I get to go back to my GI at Stony Brook (more on that in a minute). The alternative is to drop 20 more lbs at which point I will be officially underweight based on BMI and I might be able to get an ED to admit me. For those of you who haven’t seen me recently, it blows my mind that the medical profession puts so much faith in a calculation that, while explicitly defined as not meant to be used as a measure of health, thinks that I have 20 more lbs to lose!
Back to Stony Brook and their Gastrointestinal Women’s Center. When I first suspected that I had Gastroparesis and it was a rare disease that primarily impacted women, I directed my research toward finding a GI that understood women’s health and discovered the program at Stony Brook in Long Island.
I really like my GI there. She is inquisitive, a good listener and is the reason that I got my diagnosis relatively quickly. She is the one that referred me to get the smart pill test. I stopped going to her for reasons over which she has absolutely zero control. The problem is that she is impossible to get ahold of. To reach her you have to call someone who will send a message to a secretary in another building who is then responsible for conveying the message to the doctor. This can take days and invariably the doctor would call back during the 10 seconds that I stepped away from my phone two days after I left the original message. And then I would need to start the process all over again.
This remains an issue. Mary still hasn’t heard back from the messages she left to schedule an appointment for me. And I remain technically a current patient of this doctor. But, using her magic powers as a nurse, she got the medical fax number of the GI and faxed all of my records directly to the doctor. The GI then scheduled an overbooked appointment for me on July 11th. There is a reason that I like this doctor, but Stony Brook is a state university and the bureaucracy is proof of that.
For those counting, I now have 4 GI appointments. Two in July and two in September. And Mary is not stopping there. Johns Hopkins is now out for several reasons, but I am ok with that because they turned me down after misreading my records, so I am unimpressed. Mary is now working on getting me into the Mayo clinic.
Unlike everywhere else, Mayo was on the ball and called me yesterday to do a patient intake with me based on conversations Mary had started with them. Unfortunately, she hadn’t gotten far enough to get me in and they told me that they weren’t taking any new patients. But now I have a patient number there and she is still working backchannels to get me in. They are the best motility center in the US, so they might very well be worth the wait.
In more fun news, this past Monday David and I went to a street fair in our neighborhood. It was a qualified, if seriously exhausting, success and we learned some important lessons. The most important being that as amazing it is that there is so much fun within easy walking distance to our apartment, “easy walking distance” is a relative term.
I may have very little energy, but I have been trapped in this apartment for nearly a year. And although covid wastewaster rates are up in our area, it is summer and there are all sorts of safer outside places to go to and I have no intention of letting that pass me by.
When I do get out, I am limited to the few block radius I can walk. We can drive or Lyft somewhere, but even then, I can only walk a couple of blocks before I need to take a rest while we desperately look for a bench for me to sit on. But no more. Today my brand new transport chair arrives!
With a shout out to my wheelchair using friends, who knew exactly what questions to answer before I even figured out how to ask them and some further research online, I got one with 12″ back wheels (the front wheels are 8″) that are best for navigating curbs and uneven sidewalks in addition to grass. And it is light and folds up nice and small so we can stick it in any Lyft or a cab if David gets too tired to hoof it home after an adventure. We sold our Prius, but kept our CRV, so there is plenty of room for it in our car. It should be delivered today, which will give us plenty of time to take it for test runs before the street fair at Astoria Park next week. Also, I will be giving David the honor of naming the chair because he will be the one doing the hard work.
Lastly, an update on my almost brand-spanking new pump. It is working so well that I forgot this was even an anomaly until Mary asked how it was going. I can comfortably say that that bit of stress has been resolved with having both an active working pump and a working backup should anything go wrong. It is nice to be able to cross at least one thing off the list of stressors.