The first example is a veterinarian with a thriving West Village practice. He informed us last week that, sadly, the second set of blood tests confirms that the cat has a terminal kidney condition. We can hope to extend his life, have him around a bit longer, he said, if we learn to give him subcutaneous hydration and do it daily.
We immediately make plans to visit his office, to learn how to apply this liquid through a line and a needle under the flexible skin and fur on his back. We also have a few questions for the vet. A young technician gives us the demo. The doctor does not so much as stick his head in the room, nor does his colleague, another vet who sent some interactive and empathetic emails to Sekhnet.
The following day at home Sekhnet expertly applies the needle, I wrangle the cat, run the line, squeeze the bag to hasten the flow of the liquid. The Baron tolerates it reasonably well. I wind up emailing my questions to the vet.
One is about stopping the fight to give him a hated, foul tasting phosphorous binder by syringe forced into his mouth. Although it’s a primary weapon in slowing feline kidney deterioration, it makes the Baron furious and bitter and we’ve decided to stop forcing it on him. I ask about an alternative powder form we may be able to mix into his wet food or treats somehow. I also ask how far along the downward slope of the chronic, deadly disease Skaynes is, in terms of kidney function now vs. end stage kidney function. I express our disappointment at not having been given a moment to bounce these things off him in person when we were at his office to see him the other day.
He writes, helpfully and sympathetically:
He does have what is termed chronic renal failure, meaning he.s losing his ability to filter and eliminate fluid waste, conserve water and control electrolytes. It does tend to be progressive at a very individual rate. They can be around for six months to a couple years, is my experience. His blood pressure result was 165, which is normal. He should get the low protein diet daily, with fluids. I.m not crazy about the aluminum hydroxide either. If he is becoming intolerant, then I say stop it. Try the epakitin and we.ll check his blood again in three months.
Then, addressing my human concern, as a human who just brought a fatally ill animal he loves to a doctor for beloved animals and was disappointed not to get a moment of the doctor’s time:
I usually have technicians provide fluid demos and do blood pressures. Let me know in the future if you have concerns I specifically need to address.
I can read this now, four or five days later, in a neutral light. He is telling me his ordinary procedure for these demos and letting me know that in the future I should not hesitate to make my concerns known to him if they were not addressed by his technician. He was probably taking care of his day’s correspondence and didn’t pause to realize he was writing this to a person with all the concerns of someone bringing a dying long-time pet to the doctor (plus, unbeknownst to the vet, anxious about impending news on his own kidney disease). In a better world, where he would have had the time and sensitivity to look over the email before sending, he could have done much better. Reading it now, I hardly see what infuriated me so much when I first got his reply.
At the time I got it, ten minutes after I wrote him, it hit me like poison. I read his email shortly after the first time we gave the Baron the fluids, and I decided we were done torturing him by forcing the aluminum hydroxide down his snarling mouth. I read the vet’s last lines as: you should have told me if you had concerns, not really my fault, kind of your’s, that you didn’t get to express your worries to me. Kind of odd for a person who had specific questions while he was in my office, to be whining about not asking them a day later.
It was a slap in the face, piss down the back of my leg, a knee in the privacy (as a kid in Harlem once said). I felt, in light of my deep surge of righteous indignation, that I’d been admirably restrained in writing an email that, in the cooler light of a fresh read a few days later, I’m glad I didn’t send. I wrote:
Thanks for this update. Glad to hear his blood pressure was normal. We’re discontinuing aluminum hydroxide and ordering Epakitin.
As far as your last sentence, why would somebody bringing a beloved pet with a recent diagnosis of a fatal disease need to alert the vet to having concerns? In your experience, is there anybody in that situation who does not have at least a couple of concerns?
An apology, no matter how mild, for not giving us a minute or two the other day, would have worked a lot better than citing your usual policy of having technicians conduct the demo in how to prolong a chronically ill cat’s life.
I would have been within my rights, perhaps, but I’d be making things snide with a busy, caring vet who arguably hadn’t written the most sensitive sentence he could have come up with to address our feelings. Assuming he was even capable of writing a more compassionate sentence. Coming up with a sentence like that is not within the repertoire of most people, even highly decorated poets of public relations struggle over perfectly calibrated expressions of professional/personal sentiment.
My reply, though superficially polite, would have hurt the feelings of someone who most likely hadn’t meant to hurt Sekhnet’s and mine at all. On the contrary, he’d just answered all of our questions in a reassuring tone, what the hell was I chastising him about? It would have confused him, struck him as completely unfair, insane, even, and it would have pissed him off. It would have done nothing good for me, Sekhnet or Skaynes either, or any of our future meetings at the vet’s office.
My friend’s father’s father collected wise little sayings that he wrote, in a meticulous hand, on small cards. They were written in Hebrew, and the small stack of words to live by were read by my friend after his grandfather passed away. One said: all delay is for the best. The meaning was, if you feel you must act, it is better to pause first, to consider, to calm down, if needed, turn the planned action over in your hand another time.
I caught myself this afternoon ready to punch out the fucking nephrologist. It took very few text and email exchanges before it got out of hand and, once it did, I stopped myself from writing back. To be sure, I did unleash a nice, clean, snapping punch to her fucking smug, self-justifying, bureaucratic, inhumane, insecure face. I left it in my drafts folder, it laid her on the canvas groaning. But I did not send it.
Flashes of her worst traits, her more hideous assertions, flew out at me unbidden all evening. She is now demanding I pay her another $237 out of pocket, and visit her office, any Friday I choose, for the results of my May 26th biopsy, results she’d started giving me over the phone last week, results she promised to phone me about as soon as they came in.
The results came in, possibly days ago, these were the only medical records so far not sent directly to me, the patient. Then I was treated to no reply, insistence and unrepentance, all of the highest order. Thoughts of her overbearing insecurity and shabbily slapped together legalistic attack on a patient, anxious and aggravated after 12 days (thirteen now) with no news on his kidney biopsy results, enraged me anew each time I thought of this distasteful creature’s behavior.
I have been diagnosed with a kidney disease called idiopathic membranous nephropathy. At least I hope it’s idiopathic, meaning they don’t know the cause and it’s not secondary to some other more systemic autoimmune disease like Lupus, MS, or some kinds of cancer. The disease is a progressive autoimmune disease that ends, if not cured first, with dialysis or a kidney transplant, or, if those options are unavailable, death.
It is obviously important to know what stage the disease has progressed to when deciding on treatment options, most of which involve long regimens of intravenous steroids and immuno-supressant drugs, similar to the cocktails used in chemotherapy. A biopsy is the most accurate way to determine what stage the disease is at. So I had the biopsy, thirteen days ago.
When this nephrologist first tested me in April, to see if I was among the approximately 33% of membranous nephropathy patients who undergo spontaneous remission, I got test results emailed to me by a corporate third party. I contacted the doctor’s office, since the most crucial test for this disease, the ratio of creatinine and protein in the urine, had no standard range I could compare my numbers to. The test result/billing/appointment bot suggested I call the doctor. I did. I called again. I wrote.
The last thing I wrote used “unconscionable” to describe incomprehensible test results sent by marketing/billing/medical record bots to anxious patients without medical interpretation attached. It was, in the end, five days before she called to say, after apologizing for the terrible delay in getting back to me, that my numbers were slightly worse than in the January test. I was not experiencing any kind of remission, the disease was progressing.
When the numbers were retested in May she wrote preemptively to tell me she had strep, had gone to the Emergency Room, and couldn’t talk on the phone. She promised to call with the results, as soon as she could talk on the phone. I wished her a speedy recovery, not bothering to point out that strep had no effect on her ability to type. Again it was five days with uninterpretable test results before I heard from her. Again the test showed the disease was progressing. She thanked me for my concern with her strep, in place of an apology for once again keeping me hanging for five days.
So I had a biopsy, thirteen days ago. This biopsy would show, I was told, exactly what stage my membranous nephropathy was at. Based on the stage, it would be more or less urgent to begin steroid-heavy immunosuppressive treatment, the only option in American corporate medicine, immediately.
I had a call from her as soon as she got the preliminary results, a few days after the biopsy. There was some good news, no scarring on the kidney. This means once the underlying disease is cured, if it’s cured, the kidneys should be as good as new. She promised to get back to me soon with the rest of the report. I never heard another peep from her. On day eleven I emailed:
It’s now eleven days since my kidney biopsy. Any news?
On day twelve I wrote:
Twelve days with no results from my kidney biopsy. Any idea what the delay is? Are they growing a culture? Your insight will be appreciated.
After a few more hours with no insight, or anything else, from her I texted her on her cellphone, a number she’d given me to follow up on the biopsy results. Immediately after my text she made an appointment for me, two days later, on a day I’d already told her was impossible for me to come in. She acknowledged in a text that I was anxious and then said she truly believed we had discussed the date for the appointment she made and offered no word on the results of the biopsy. She got very shitty when I told her to put herself in my position, waiting for this news, and getting only silence and bureaucratic non-replies. Clearly her feelings were hurt. She wrote:
Dear Mr. Widaen,
We had preliminary conversation about your renal biopsy result over the phone (the week of 6/29/2017) and discussed that appointment 2 weeks after biopsy would be adequate time
to receive a full result that we would discuss once you come in.
I am sorry but I do not remember that you said this Friday was not good (I remember last Friday was not good) and I truly believe we set the time to meet this Friday.
However, it is not an emergency and if this Friday is not good for you I can meet with you at your earliest convenience next week or the following week.
I understand that you are anxious but I was not able to reply immediately.
For further communication, please use my chart and you may call office to leave an urgent verbal message.
Please let me know when you would like to come for an appointment.
>I replied, insula aglow:
This is very similar to your previous replies. Last Friday was not good because it was the day of my renal biopsy, as you could probably know because you were there [this was a low blow, and an inaccurate, emotional blunder, my biopsy was actually two weeks ago Friday-ed.]. I am anxious about the results, which should come as no surprise, and it is neither professional, nor humane, to respond in this bureaucratic fashion. Imagine how you would feel in my situation, twelve days after a kidney biopsy, if you can.
Then it was her turn to be the tough guy, doubling down on the bureaucratic prerogative:
Your renal biopsy was on 5/26; 2 weeks after biopsy would be this coming Friday and that is what I had on my schedule.
Despite “lack of communication” I do remember about you and remember to reserve an appointment spot for you.
Again, I am sorry for assuming that you are coming this Friday and we would have a full discussion as planned.
Please let me know when you would like to come in for an appointment.
Fool me three times, go fuck yourself. I was angry at this point. She’d promised me a follow-up telephone call as soon as she had results. She promised me this again when she called with the preliminary results about the lack of scarring a week earlier. Instead, she claims to understand that I am anxious, equivocates about a “lack of communication”, corrects me on my stupid error about the date of the previous Friday, claims to have never forgotten about me, even as, coincidentally, she remembered my case immediately after my third reminder text, apologizes for an incorrect assumption, gives no further information on renal biopsy and the status of my disease and stands by her previous offer, to have me come in and pay her $237 out of pocket once again to find out what the biopsy showed.
You can picture how many new assholes my terse email response ripped in every part of this poor woman. I, thankfully didn’t send it. Brooded for hours longer, then finally calmed down enough to remember that you don’t win a fight with somebody like this. This morning I sent her a secure reply:
Please send the biopsy report to my primary care doctor, so and so, here is his fax number (…) his telephone number is (….). Thanks.
Now, with my metrocard, on to the subway to see the sights! Up, up the motherfucking high road, pirates!