This is the last of Julie’s1 significant hospitalizations for which I have sufficient contemporaneous e-mail that the reader can make sense of the events.2 Because Julie handled much of the communications herself via individual phone calls and messages, the set e-mail posted below is less comprehensive than the others I have published in this blog. As was true of the other hospitalization e-mails, however, I sent these messages to our family and friends to let them know about Julie’s condition during her stay. This correspondence was composed on the run and is recorded here as it was originally written, so it may contain more than my usual quota of typos and grammatical glitches and, because I was not privileged with foreknowledge of the plot line, the dramaturgy is disadvantaged. The content is also more medically oriented than one might otherwise have anticipated. I’ll leave it to the reader to decide the mix of psychological and pragmatic elements that led to my choice of subject matter.
Julie was hospitalized on June 10, 1999 and discharged June 29, 1999. I sent an e-mail describing the admission on the 10th but didn’t send the second e-mail until June 20, 1999, when Julie’s fatigue increased to the point she couldn’t handle the communications herself. I then sent daily messages until June 26, the day before her discharge. There are also two e-mails from Julie, one each on June 25 and June 26, both written while she was quite ill.
I fear the inherent nature of these intermittent posts may have misrepresented Julie’s hospitalizations as isolated interruptions in her otherwise tranquil life. Understanding the health and healthcare context in which these admissions occurred is key to correcting that misperception. Julie’s breast cancer was originally diagnosed almost 20 years prior to this hospitalization. Over the years, she had undergone multiple courses of chemotherapy and radiation therapy as well as several operations and untold office appointments with her doctors. By this time, medication side-effects had damaged her kidneys to the point they no longer functioned, requiring her to undergo hemodialysis or peritoneal dialysis. In the preceding twelve months, there had been three hospitalizations of a week or more, several emergency room visits, and dozens of urgent phone consultations. She was on many medications (including a couple that required injections which I gave because she could no longer manage them) prescribed by at least five different physicians, and it was the unusual week in which no changes were made in her regimen. I had, by now, set up a spreadsheet on the computer to track her medications. The consequences of her illnesses and the side-effects of her treatments typically resulted in ongoing bone, muscle, and joint pain, nausea, vomiting, vertigo, vision and hearing loss, mood fluctuations, and extreme fatigue. Prolonged episodes of confusion, semi-comatose periods, and frank delusions were not unusual. While Julie’s life did not consist exclusively of her disease and its treatment, I hope this provides a sense of her daily routine when she was not an inpatient.
The E-mail Report Of Julie’s June 1999 Hospitalization
Thursday, June 10, 1999 5:25 PM
Julie has asked me to let you know that she was admitted into the hospital today with a diagnosis of peritonitis. If you’re one of those slackers who blew off that day of medical school, that means she has an infection in the abdominal cavity where her dialysis takes place. (The dialysis itself is required to remove the toxins the kidneys would ordinarily take care of.) This is not an unusual problem for those undergoing peritoneal dialysis and is often handled on an outpatient basis. Julie, however, failed to respond to antibiotics within 24 hours and was in severe discomfort with abdominal pain and vomiting. As a result, her nephrologist, her internist, and, believe it or not, the managed care administrator decided a hospitalization was necessary.
Even Julie agreed.
Unlike the last two admissions, Julie is of sound mind, if not body. Consequently, she plans on serving not only as one of her own medical doctors but also as her own spin doctor. So, if you want to know more, you’re welcome to call or write her. I’ll also pass along printed versions of any e-mails address to my e-mail address < *** @***.com> or hers < ***@***.com>. To reach her by more conventional means, try ***.
Sunday, June 20, 1999 10:59 PM
Good Evening -
If you’ve just joined us — and a number of folks who are traversing the globe, changing their e-mail addresses, or just don’t check their e-mail accounts every six minutes apparently have only just now gotten the word about Julie’s latest sojourn at Alexian Brothers Medical Center — here is where things stand.
Julie was admitted 10 days ago with a diagnosis of peritonitis. Since then, she has been the center of attention for a epidemic of doctors; the focus of several animated conversations involving internists, specialists, and the occasional HMO bureaucrat; the target of a batch of antibiotics; and the subject of even more tests, including but assuredly not limited to multiple cultures of peritoneal fluid, blood, and any other bodily secretions, excretions, and humours the lab techs can get their hands on; three (count ‘em) abdominal CT Scans; a conventional barium X-ray of her intestinal track; serum electrolytes; blood counts; and the traditional vital signs taken at the most awkward moments of the day.
As of today, the active problem list continues to consist of
- Peritonitis. The infection has persisted longer than one would expect in the face of an antibiotic to which the bacteria is sensitive. The most likely explanation is that there is a source that is continuing to seed the infection. The need to discover this source is the motivation for most of the imaging studies and other tests Julie is enduring.
- Nausea and Vomiting. The etiology is unclear (translation from clinicalese : “We don’t have a clue why this is happening now”) and seems to be idiosyncratic (translation from clinicalese: “We don’t have a clue why this is happening now — but it’s definitely not anything we did”). The situation has been severe enough that hyperalimentation (nutrition delivered via tubes) has been considered.
- Elevated Blood Glucose. Julie’s blood sugars have been erratic through most of the hospitalization, and she is currently on insulin. This is, most likely, a transient situation that will quietly pack its bags and leave town after the primary problems are resolved.
In addition, she is, in the argot of the Ozarks where Julie and I were raised, “sick and tired of being sick and tired.”
By appearance alone, today has been her best since the hospitalization began. She literally sounds better — probably because of the successful treatment of a fungal infection of her throat (one of those bonuses you get for using antibiotics that wipe out the benign bacteria that usually compete with and keep in check the fungi that infected Julie). She was able to eat and keep down her version of the Blue Plate Special today — an Einstein Brothers Harvest Muffin the kids and I brought, bits and pieces of breakfast and lunch, and for the grand finale an entire Alexian Burger followed by exotic sweets the obliging nurses delivered from the first floor candy machines.
Julie and I appreciate more than I can express the calls, e-mail messages, thoughts, wishes, and prayers.
Monday, June 21, 1999 5:36 PM
The Julie Gazette Is Back On The Air
Julie has finally succumbed to the urgings of her fans in cyberland and has requested that I once again take keyboard in lap to issue, on a more or less daily basis, updates of her conditions physical and metaphysical. She remains, however, vigorously (indeed, one might even say vehemently) resistant to my notion of offsetting the HMO co-pay by selling ad space in this publication.
Here’s today’s punch line (you all can create your own set-ups): Having eliminated the most likely anatomic regions as the main staging area for the marauding bacteria (Serratia, by name), the infectious disease and nephrology consultants, in accord with the attending internist, have developed the working diagnosis (i.e. best guess) that the peritoneal catheter itself is the cause of the ongoing infection. Consequently, tomorrow morning, the consultant from surgery will remove the catheter from Julie’s abdomen. She will cease peritoneal dialysis for six weeks and, during this period, undergo hemodialysis instead. (The surgeon will also devise a port just below Julie’s neck that will provide a relatively nontraumatic gateway to her blood system for the hemodialysis procedure.) There are multiple physiological differences in filtering toxins from peritoneal fluid and from blood but the significant issues in Julie’s mind are those of logistics. Hemodialysis means a one-hour trip each way to the nearest hemodialysis center three days a week for a four to five hour dialysis session. Julie was able to carry out her peritoneal dialysis (with the most modest of assistance form me) at home seven nights a week during her regular hours of sleep. The plan, following the surgical procedure tomorrow, is for Julie to remain in hospital for up to a week prior to discharge home (sooner if she has no negative sequelae to the operation and is able to keep food down).
Answers to the most frequently asked questions from Julie’s friends follow:
Q: Why did Julie get peritonitis?
A: In the words of the Infectious Disease Consultant, “If you are not fastidiously careful with your technique when performing peritoneal dialysis, you’re going to get peritonitis. If, however, you ARE fastidiously careful with your technique when performing peritoneal dialysis, you’re going to get peritonitis.” The more pertinent question would be “How did Julie go for a year without peritonitis?”
Q: Why aren’t the antibiotics working?
A: The antibiotics are working (i.e., they are killing Serratia organisms); they just can’t eradicate the bacteria because more keep entering the peritoneal area (think BraveHeart or the Korea War after China started supplying soldiers to the North).
Q: How is dialysis actually done?
A: Basically accurate, albeit necessarily oversimplified, brief explanations of hemodialysis and peritoneal dialysis can be found, respectively, at these web sites (there are many, many web sites dealing with these procedures — some that are no doubt better than the ones I happened to find first and list; if you want more information, just run a search from any of the major search engines for “hemodialysis” and “peritoneal dialysis”):
Having concluded the scientific portion of our program, I must report that Julie looks much better, is more animated, and more spontaneous. She has also become more demanding, taking advantage of my polite, socially correct queries about her wishes to direct me to secure turkey sandwiches, purchase a magnifying page so she can read more easily (some of her meds disrupt her vision), and bring her books from home. This should serve as fair warning to those who casually ask if there is anything they can do.
Q: Can Julie handle phone calls?
A: Apparently, Julie can handle them better than the Alexian Bros phone system can. False busy signals, linkages to other rooms (and, in one case, another hospital), and such are frequent. Persevere. The hospital’s number is 847 437 5500. The message then instructs you to push “1,” then the bed number (“2″) and finally the room number (“241″).
Tuesday, 22 June 99
Julie’s operation to remove the peritoneal catheter and her recovery from that surgery were, to use medical argot, “uneventful.” It may help place that bland description in a meaningful context to note that I learned as a third year medical student to warn my patient that he or she “might feel some discomfort” just before I plunged a needle into his or her spine and that when the medical student performs an accidental splenectomy when he or she intended only to pull that organ away from the area where the surgeon is working, it’s officially listed as the innocuous-sounding “splenic mischief.” But, it works the other way too. Not even the surgeons are typically seen bumping chests in celebration, for example, of a particularly well executed suture. Anyway, the point is that an “uneventful” procedure is the top grade Julie has received in this hospitalization.
Currently, the prescribed treatment plan calls for monitoring and observation to determine how rapidly or slowly Julie recovers, whether the infection actually ameliorates, how well the hemodialysis clears the toxins, and such. Depending on her blood levels, the hemodialysis will begin tonight or tomorrow.
The latest positive sign is Julie’s declaration that she is bored, expressing curiosity as to whether I am still capable of smuggling in electronics and food beyond those provided in an HMO-financed hospitalization. My best shot, I think, is to disguise a laptop as a Whitman Sampler and wrap the modem cable in a bow.
Oddly, everyone seems to agree that Julie feeling bored is a sign of returning health, but I have observed that when Sam or I mutter something about being bored, those who know us flee the scene.
PS Because of the surgery and some post-operative grogginess (on Julie’s part, not mine), the e-mails received last night and today won’t be read until tomorrow.
Wednesday, 23 June 1999
Julie had a setback today that is relatively minor but significantly disheartening to her (and me). The new port installed to provide access to her vascular system for hemodialysis is not functioning optimally. A major determinate in the effectiveness of filtration accomplished by dialysis is the flow of blood into the machine and across the filtering membranes. That is, if the volume of blood flowing across the filters every second falls below a given threshold, filtration is, for practical purposes, inadequate. Today, when hemodialysis was attempted for the first time with this port, the flow was diminished below the threshold. The surgeons and the nephrologist agree the next step is to attempt to increase the flow by adding medications to decrease the viscosity of the blood arising from clotting or other mechanisms. This is not an unusual problem nor is it likely to prove an insurmountable one. It’s just that, occasionally, we would like Julie to catch a break.
I was able to deliver bagels, a muffin, and a TV/VCR with three Blockbuster videos. Because of the medications, Julie’s vision remains poor so that reading, her preferred activity, is difficult to sustain for long. When I most recently spoke to her on the phone, she was indulging in yet another of her secret vices: watching Jeopardy.
While I’ve begun taking it for granted, Julie and, to an even greater extent, the hospital staff are impressed with the ten or so e-mail messages Julie routinely receives (in printed form) daily. I’m less impressed than I am grateful and thankful. The e-mail review is, easily, the high point of Julie’s day.
I promised Julie to keep this short. More tomorrow.
Thursday, 24 June 1999
The Early Edition
Having just heard from Julie, I thought it worthwhile to pass along a bit of good news. The “I.V. team” descended on Julie last night and, five minutes, later the new catheter is patent (term used by 3rd year med students to denote an opening that is , uh, open). Hopes are justifiably high that the hemodialysis scheduled for today should be successful.
One can’t help but think that the “iv team” could be better marketed. I’m thinking “Team I. V.” with a slogan along the line of “We’ll get the flow; you get to go.” Flashy uniforms, ripaway warm-ups, and maybe one of those grandiose introductions a la the Chicago Bulls with laser spots and a booming announcers voice declaring through the smoke and lights, “And now — YOUR Alexian Brother Team IV.” Or not.
What a cheap way to segue into Julie’s activity of the night: the viewing of yet another triumph of hugs over thugs as the San Antonio Sweetness & Light overcame the Ewingless Knicks. Happily, the TV/VCR is functional; Julie pronounces herself ready to Mambo after watching “Dance with Me.” Of course, as long as I’ve known Julie, she’s been ready to Mambo. This morning’s highlight (as of 5:45 AM at least) was the ingestion of a poppy seed bagel (gotta build up those opiods) that I brought yesterday and the accommodating nurses on the unit toasted for her this morning. Those of you who know Julie’s morning habits (by the way, I’d like to know who you are and how you know them) will be happy to learn that she has resumed, for the first time since the admission, her coffee habituation, convincing those nice nurses into bringing the potion to her bedside, a trick she taught me and which I’ve performed daily for several years.
So, I think (in stretching the sports metaphor to the breaking point), last night and this morning were quiet and efficient victories which lacked the drama (that I can live without) and raucous applause deserved.
Friday, 25 June 1999
Thus Spake Julie
I had hoped that my return to e-mail would be individualized. However, Allan has worked out a system that at least lets me get word out. I scribble something in the hospital and he types it up and sends it out at night.
I had my double operation on Monday – remove a peritoneal catheter, install a Port-a-Cath. Allan thinks they should install a mother board in my stomach and then just plug in what I need each day.
At first we thought I’d be here just a day or two and we packed accordingly. Yesterday, with the realization that I’d be here longer, we found that a U-Haul may not meet all my needs. Allan brought me a small TV with VCR and tapes. Much better selection than the two channels the hospital TV shows at 3 AM.
I’ve been on a morphine pump most of the time I’ve been here. It’s amazing how much more effective pain relief you get when you push a button for immediate delivery of 0.1 mg than when you ask a nurse and wait 15 minutes for 0.5 mg.
News from the forefront of medical research. They make a shampoo for which you don’t need water, and it works quite well. Now, if they could just figure out how to cleanse ones blood without kidneys.
Saturday, 26 June 1999
Good Morning -
In elucidating a fundamental axiom of his philosophy of life, one of my patients explained to me “If it’s not one thing, it’s two things.” In the case of Julie’s medical life, this more properly becomes “if it’s not one thing — and it never it — it’s sixteen things or more, each complex and each interactive with another factors.”
The Julie Gazette was not published yesterday, primarily because it soon became apparent that the information we had to deal with was so ambiguous that we would have had to change the name to the Julie Enquirer and so inconstant that the information we sent out could have varied by 180 degrees dependent on the timbre of the situation at the precise point in time.
The internist and I were simultaneous visitors yesterday morning. At that time, the internist wrote orders for Julie to be discharged following the hemodialysis session set for today (Saturday). It wasn’t long, however, until the surgeons, the dialysis folks, and the infectious disease consultants began weighing in. The issue du jour was the still unreliable flow from her vascular port. The last dialysis session I attended required lots of manual manipulation of the port and direction of Julie into awkward positions, oddly reminiscent of those I’m told are illustrated in the Kama Sutra to promote blood flow through the port. (An actual example follows: “now roll over to the right, raise your left arm over your head, and cough;” well, I did it but I don’t see how it helped Julie’s dialysis.). After enough policy shifts Friday afternoon to rival the Clinton administration, the word at 10:30 last night (Friday night) was 1. Julie would be scheduled for a 4 AM (not a misprint) dialysis session today (Saturday) 2. If the dialysis could be adequately completed (by this time, no one believed the dialysis would go smoothly) by whatever means possible, the port would be surgically manipulated as a non-emergency on Monday. 3. If the dialysis could not be adequately completed, the port would be surgically manipulated that day (today, Saturday) as an emergency. The “emergency” designation derives from the necessity of Julie receiving dialysis today. 4. Discharge plans are up for grabs. Theoretically, Julie could still leave the hospital as soon as today. If you’ve drawn today in the discharge pool, however, I wouldn’t try to cash it in yet.
I just spoke to Julie at 6:15 AM. The dialysis attempt was a no-go with hardly any fluids being exchanged. At this point, we (the generic, not the royal “we”) are awaiting the surgeon’s arrival at 7 AM. At that time, (Alert! More technical jargon coming up) “we’ll just have to see what happens.” Today’s report, obviously, raises more questions than it answers (not the least of which is “since when do dialysis teams arrive before the surgeons?) but Julie and I didn’t want to defer sending this information about her status any longer.
In related news, Julie does have a tentative post-discharge hemodialysis schedule. Following her hospital discharge, she will travel an hour each way to the outpatient hemodialysis program for a sessions from 6-10 AM Tues, Thurs, and Sat. (Political commentary: the next time you read an angry editorial about the overbuilding of medical facilities and overabundance of services, please think of Julie, just discharged for two weeks of hospitalization, able to walk only a few steps with assistance, awakening at 4:15 AM three days a week to spend half her waking hours that day going to the nearest available hemodialysis facility in Chicago outskirts). Because of Julie’s overwrought maternal instincts, she resists the notion that Max could be left alone from 4 Am until 8 AM when it would be time for him to hitchhike to his camp, we’ve invited my mother to be our house guest/nursing aid/slave for the next few weeks.
O bla dee; O bla da, …
Saturday, 26 June 1999
Part II (The Do It Yourself Multimedia Version)
Late Breaking News
I’ve attached a teletype sound file. To achieve the proper “late breaking news” effect, open or double-click that file for background and read the rest of this aloud with that Walter Winchell staccato phrasing. [Blog readers can, of course, simply click on the arrowhead below]
Anyway, I spoke to Julie at noon. The surgical readjustment of the port transformed into a complete replacement of this apparatus which, as docs are wont to say, she “tolerated well.” Consequently, the failed 4 AM dialysis has been rescheduled for later today — 10 PM to be exact. If that goes well, the ever-tentative plan is discharge tomorrow (Sunday) morning.
Sam, Max, and I are headed off to visit Julie. If there is more information available later, I’ll pass it along.
PS There seems some doubt in cyberland about the accuracy of my recall of medical school terminology. I did miss a class or two to learn the fine art of handball but “patent” is not a neologism created by my fevered brow. My Roget’s Thesaurus lists a subgroup of synonyms for “patent,” the first of which is Open: perforated, perforate, wide open, ajar, unclosed, unstopped, oscitant, gaping, yawning.
PSS Julie did manage to watch the entire Knicks-Spurs game last night. Her commentary follows: “Ahem – Na-na-na-na Na-na-na-na Hey-hey-hey Good-bye”
Saturday, 26 June 1999
Subject: Julie Writes
The material below is my transcription of Julie’s handwritten notes. To orient the reader, this was written early Saturday (26 June 99) — PRIOR to the e-mails from me although my e-mails were sent before Julie gave this to me. Sorry for the confusion and any anticlimactic cast thereby caused.
Sometimes it seems like all truth is found in country music. “If it weren’t for bad luck, I’d have no luck at all.” “I’m sick and tired of waking up sick and tired.” And a little ditty coined by Allan, “The first word in mess is me.” The only step down from here is romanticizing the bucolic life of the turkey farm.
I went to sleep last night thinking I would be dialyzed at 4 this morning and discharged by noon. Nurse Ned woke me at 11:30 to tell me plans have changed. it turns out, on closer inspection of the X-rays, that my catheter is not patent after all. The plan for today is now as follows. They will try to dialyze me at 4:00. If they can force it through, I will be in modified medical crisis. I have to have surgical repair before Tuesday. If they can’t push it through, I will be in immediate crisis and will have emergency surgery today. it’s hard to know which option to root for.
I am reminded of the moral lesson of the frog who will hop out of boiling water, but will allow herself to be placed in cool water which is slowly heated to a boil. Allan assures me that this story is apocryphal — frogs won’t really sit and wait to be parboiled. However, it should be true. It seems true. Two weeks ago, if I’d been told, “You’re going to have a spot of peritonitis,” I’d have said, “I can stand some tepid water.” If I’d been told of the vicissitudes of the past two weeks, I’d have hopped out of that pot.
Which is not to say that I am in despair. Somehow each new trouble just feels like one more new trouble.
Well, I hear my 4:00 chariot wheeling down the hall. I chose to take the fact that they’re half an hour late as no omen at all. Allan, who has spent much of his life in hospitals, actually asked me if I could get a schedule of my activities for the next day. Man proposes, transportation disposes. The hospital is in control of the people who are sent around to take you from one holding area to another.
For over two weeks we’ve been telling ourselves, “tomorrow we’ll know what’s going to happen.” Who knows, maybe today that’s true.
Allan comes in each day with a stack of e-mail for me. I cannot tell you what all your messages mean to me. I feel connected to you all.
For more information about Julie Showalter and her writings as well as instructions for finding all of the Julie’s Story posts and downloading a PDF version of all the posts comprising Julie’s Story, go to Julie Showalter FAQ.
- Julie Showalter was the fiercely intelligent, sexy, and loving woman and prize-winning author, with whom I had a outrageously wonderful 20 year marriage that ended with her death in late 1999 from cancer diagnosed the week of our wedding nearly 20 years earlier. Many posts on this blog are about her, our unlikely romance, and our life together, and still others consist of her writings. Information can be found at Julie Showalter FAQ. [↩]
- Julie was also admitted to the hospital in November 2006 but was discharged after an overnight stay. [↩]