Category Archives: Julie Showalter

Introduction

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.

Background

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

Hello -

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 ***.

–Allan

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

1. 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.
2. 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.
3. 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.

–Allan

Monday, June 21, 1999 5:36 PM

The Julie Gazette Is Back On The Air

Hello -

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”):

http://lifeoptions.org/nlnh/9-10.html

http://lifeoptions.org/nlnh/10-11.html

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″).

More tomorrow

–Allan

Tuesday, 22 June 99

Hi -

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.

Go figure.

–Allan

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

Hello -

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.

–Allan

Thursday, 24 June 1999
The Early Edition

Hello -

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.

–Julie

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, …

–Allan

Saturday, 26 June 1999

Part II (The Do It Yourself Multimedia Version)

Hi -

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]

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

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.

-Allan
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

Hi -

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.

–Allan

Dear Friends,

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.

Love,

Julie

Julie’s Story

Next Installment: And Then She Was Not
Previous Installment: The Hospital Epistles: March – April 1999
First Installment Of Julie’s Story: This Is How A Love Story Began

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.

_____________________

1. 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. [↩]
2. Julie was also admitted to the hospital in November 2006 but was discharged after an overnight stay. [↩]

Introduction

I haven’t published an entry dealing exclusively with Julie¹ in this blog in more than two months. Part of the reason for this, of course, is that I have already posted much of our history together, especially the happiest times, as well as uploading her writings onto this site. The other reason is that recently I haven’t had the fortitude and psychological energy required to write about the last part of her life.

This time of year, however, I find my thoughts are more and more drawn to Julie, and this morning, when I sat at her desk to complete the final edit on (what I anticipated would be) today’s piece, I immediately knew it was instead necessary to write about her.

I recently ran across some more of the e-mail I sent during Julie’s various hospitalizations. My intention is to publish these first followed by some new material, returning to my earlier informal schedule of posting about Julie once every week or so.

Except for the time period covered, this post is similar to The Hospital Epistles: May 1998, and Uncompromising Faith, Unremitting Hope, Unyielding Love. I will preface it with the same explanation and apologies: This is a collection of e-mails I sent our family and friends to let them know about Julie’s condition during her hospital stay from March 29 to April 6, 1999. 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.

The E-mails

[In this collection of e-mail, some of the times and dates that precede each piece and should indicate when the message was sent may have been corrupted because of forwarding of e-mails and the technical means by which these messages were archived. I am, however, fairly confident they are in chronological order and that the dates and times listed within the body of the messages themselves have been preserved correctly. I also note that there is no message for April 4th. Although I was in the habit of e-mailing daily updates, I may have skipped that day, or that message may have been accidently lost from the archive.]

Sunday, March 28, 1999 8:40 PM

To Our Friends & Family -

I regret that I am again writing to let you know that Julie has been hospitalized.

Since Saturday evening, Julie had grown increasingly disoriented and confused. I contacted her nephrologist who thought that her routine evening dialysis might resolve the problem. Early this morning (Sunday, 28 March), however, it was apparent the situation was worse, and I again called her physicians, who agreed that an evaluation was needed. By mid-morning, she was seen in the Emergency Department at Alexian Brothers Hospital and by early afternoon she was admitted to the Intensive Care Unit, where she remains at present. By this afternoon, Julie was unable to respond appropriately to any queries or to follow simple instructions. She also had two seizures while in the Emergency Department.

Serendipitously, all three of her primary physicians — her internist, her oncologist, and her nephrologist — were on on-call this weekend and saw her before she left the ER. She has already undergone her usual gauntlet of examinations, including blood tests; blood pressure, temperature, and pulse readings; chest X-ray; EKG; brain CT scan; and a variety of poking, probing, and prodding by various clinicians. None of these has revealed pathology sufficient to account for the mental status changes. A neurological consultation is scheduled for tomorrow.

The smart money re diagnosis appears to be on a new medication introduced to Julie’s regimen Thursday in hopes of ameliorating the spasticity in her mouth, neck, and jaw. After Julie became disoriented Saturday night, I did a quick Internet search and found that not only are confusion and ataxia occasional side-effects of the medication (Baclofar) but also that fully 80% of this agent’s metabolism is accomplished through the kidneys. In effect, that means that, even with dialysis, patients such as Julie who have compromised renal function are at risk for toxicity from this medication, if given at routine doses. If this is indeed the cause of the problems, the treatment of choice is tincture of time, i.e., waiting for the liver (which is responsible for the other 20% of the drug’s metabolism) to eliminate the active agent. It’s not certain, according to the literature, but ongoing dialysis may be helpful as well.

Sam & Max are concerned but have seen their mother pull through so many crises that they are certain of her recovery. I am striving to share their faith and optimism.

The ICU allows only immediate family to visit and, in any case, Julie is unable to participate in an interchange. I will forward any changes in her status, including transfers to a less restrictive ward. As was true in her last hospitalization, I am sending these notes to a list of folks composed of those who would, by my guesstimate, be interested; if you do not wish to receive these reports, just let me know.

As always, we appreciate your thoughts and prayers.

–Allan

Monday, March 29, 1999 9:18 PM

Hello -

There has been almost no change in Julie’s status over the past 24 hours. She remains arousable but cannot carry out simple instructions; it’s not clear that she recognizes anyone.

I spoke at length with Julie’s Attending Physician. The working hypothesis is still that this syndrome was and continues to be caused by the medication she took for two or three days last week. If this is correct, it could take several days for the drug to be metabolized sufficiently for Julie’s mental status to improve.

Julie’s treatment in the ICU is limited to supportive care, ongoing dialysis, and supplemental oxygen. Diagnostically, the doctors remain concerned about the possibility of her cancer invading the central nervous system. Consequently, she received an EEG today; a lumbar puncture and MRI are also being considered.

We value the support, prayers, and offers of help we’ve received. If I have not yet responded to your calls or e-mail, it’s because of the time crunch in which I find myself, not because we are not appreciative. Thank you all.

–Allan

Tuesday, March 30, 1999 9:10 PM

Good Evening -

There is little to report about Julie. She continues to be arousable and able to move her limbs but does not respond to requests or queries.

Hemodialysis did start today and will continue as a supplement to her peritoneal dialysis. I spoke to the neurologist, who saw nothing to be gained at this time by a lumbar puncture or MRI so those tests will not be carried out — at least for now. I also spoke to the nephrologist and internist, but neither had anything new.

The core message is that — unless her symptoms change — significant adjustments to the treatment she is receiving now are unlikely.

Now we wait.

–Allan

Wednesday, March 31, 1999 5:06 PM

Hello -

You may recall that my last message closed with something like “now we wait.” Well, sometimes the wait is a long one; sometimes, it’s not so long. I received a call from the ICU between 6 & 7 AM that Julie wanted to talk to me. (Actually, she wanted to talk to me at 4 AM but she couldn’t convince the ICU nurses that I am always awake by 4 AM.)

Julie is able to respond to instructions, understand questions, and participate in her treatment. When I walked into her ICU “room” in late morning, she and the dialysis nurse were discussing details of her complicated dialysis routine.

This is not to pretend that all is well. Julie is delusional (she thought, for example, that the kids had been at the hospital that morning), is still confused as to date and time, and occasionally hallucinates. She also has abdominal pain, moderate respiratory difficulty, and back & leg pain (from being confined to a bed for four days). While she asked for her computer to write e-mail, this is not yet in her capacities — either mentally or physically. Nonetheless, being able to talk to Julie again has overcome even my overdeveloped pessimism, rendering me, if not giddy as the proverbial schoolgirl, at least downright joyful.

I haven’t spoken with her physician yet so I don’t know the official plan. I do know she had been seen today by Occupational Therapy, the Dialysis Therapist (Julie continues to receive both hemo- and peritoneal dialysis), Physical Therapy, and a very nice nurse whom Julie has unfortunately if not inaccurately designated “the Vomit Therapist” (her job is actually administering the optimistically named “swallow test”). Julie apparently passed the test since the Nutritional Therapist came by to schedule Julie’s first meal since Saturday. If you’re interested, Julie’s choices were soup & sherbet with a side of Ensure.

It seems spectacularly unfair that anyone as good and gentle as Julie should spend so much of her time and effort either biting the bullet or dodging it. Of those rotten choices, however, dodging –- trust me on this — is the way to go.

Julie, whose manners surpass mine even when she’s delusional and hallucinating, made me promise to thank everyone for their concern and prayers. My thankfulness, if less obsessively expressed, is no less heartfelt.

–Allan

Thursday, April 01, 1999 5:01 PM

Hello -

The content of my update this evening is, I suppose, less dramatic than Julie’s reawakening yesterday. Nonetheless, this may be one of those times when “more of the same” isn’t so bad.

Julie is much more cogent today than yesterday although there is still significant confusion on her part. To meet her requests, I lumbered into the ICU burdened by two bags that United Airlines might have denied carry-on status. Thankfully for my back, the ICU permits no cellular phones or laptops (I offered to make sure she turned them off until five minutes after takeoff but they stood firm). Julie did smuggle on board her own nightclothes, two books, pen & paper, a Walkman, a recorded book on tape, my Jimmy Buffet and Beach Boys tapes, pictures of the kids, her phone directory downloaded from her computer, and printouts of all her e-mail (half of which I read to her during today’s visit). I have no idea how much of this stuff she will be able to operate (I thought it was a tad early for the squash racket), but as many of you have observed, her requests have typically proven irresistible to me. I also managed to track down some decent strawberries which were a big success (admittedly, it’s not so hard to achieve “big success” status when the high point of the preceding meal was Gerber’s Baby Food applesauce ).

Discussions now involve what kind of dialysis Julie should have in the future, when to pull the femoral catheter, how much longer to stay in the ICU, and so forth. As decisions are rendered, I’ll pass them along.

Sam wants me to let folks know that the first of his mother’s daffodils is now is full bloom. Julie passes on her love.

–Allan

Friday, April 02, 1999 10:22 PM

Hello -

My update tonight is less cheerful than those of the last two or three days.

You may recall from an earlier message that Julie had experienced some problems with her breathing. These have worsened. After conferring, the internist and neurologist have ordered a minor tranquilizer, a ventilator mask (AKA oxygen mask), and medications administered in the gas mixture to shrink congested tissues within the breathing apparatus. When these proved unsuccessful, a laryngoscopy was completed with the discovery that two of her vocal cords were paralyzed. At this point (approximately 9 PM Central Time), a pulmonary consult is planned for later tonight.

The difficulty breathing increases Julie’s anxiety which then increases the difficulty breathing and so on.

I’m hopeful that the pulmonary consultation will lead to a definitive treatment plan. I’ll let you know what happens.

–Allan

Saturday, April 03, 1999 8:16 PM

Good Evening -

I fear that this hospitalization may permanently warp Julie’s sensibilities as a writer. The conscientious writer, I’ve been instructed, keeps in mind the rhetorical question favored by her writers’ workshops, “Did the narrative earn that ending?” (To achieve the proper literary affect, it’s essential to voice this phrase in a taunting, disapproving tone and to emphasize and extend the fifth word as “earrrrrrn.”) Were Julie to write an essay on the course of her illness (I envision a long Susan Sontagesque piece in the New Yorker), it would, I’m sure, point out that the Sturm und Drang laden descriptions of her medical problems — whether in her medical record or my e-mail updates –- inevitably leads to an anticlimax.

And, as it turns out, I have a specific example in mind. Remember that ominous stuff in yesterday’s update about respiratory problems and such? Well, as my east coast metroplex buddies say, “fugedaboutit.” At 11 PM Julie was gasping for breath and was so agitated that despite medications and restraints she pulled out her femoral catheter (no small task). The nurses worked with her throughout the night. The pulmonary consultant arranged for emergency CT Scans and an MRI. (I feel compelled to include these details by way of declaring, in emulation of my literary role model, Dave Barry, “I am not making this up.”)

By the time I called to check on her this morning (showing rare restraint, I waited until 7 AM), however, Julie was, in technical terms, “a heck of a lot better.”

She has had no breathing problems today, she is more cognitively intact, and she just looks better.

When queried as to the cause of the sudden improvement, the pulmonary consultant, the internist’s on-call coverage, the nephrologist’s on-call coverage, the infectious disease on-call coverage, and the ICU nurses (I didn’t poll the oncologist’s on-call coverage), in a display of remarkable interdisciplinary accord, responded as one –
I dunno.

Julie is still confused about what has actually happened versus what she has hallucinated over the past several days, but seems in touch otherwise. She remains weak, not having been out of bed for a several days and not having been allowed food or drink by mouth because of the fear of aspiration.

Nonetheless, things were so ho-hum by this afternoon that Julie was deemed no longer pathological enough for the ICU and was summarily moved to a regular room. Should you wish to contact her, the address and phone number follow.

She tells me she will be ready to handle phone calls Sunday. My experience, for what it’s worth, is that she tires easily.

What can I say? To that rhetorical question, I rhetorically answer,
Well, “thanks” seems inadequate but I can’t think of anything better.

–Allan

Monday, April 05, 1999 11:15 PM

Hi -

OK, who had Tuesday in the pool?

Yep, Julie now has an estimated date of discharge: 4/6/99.

Da Boyz & I visited tonight. Sam and Max were polite enough but they were clearly underwhelmed — no seizures, no new tubes going in and out of her body, no hallucinations, … .

Julie seems, in fact, fully recovered from those symptoms that began cropping up 10 or so days ago with the only obvious sequelae being pervasive and profound fatigue.

Unless there’s a catastrophic change in plans, this concludes my epistolarly efforts until the next episode of crisis journalism or the Christmas newsletter, whichever comes first. While these messages fall in a specialized niche and provide an inherently one-dimensional view of Julie, I will point out that when I turn up in her short stories, I’m not exactly portrayed as a testosterone-enhanced version of Alan Alda. The most sympathetic version of yours truly I can find in her work features me as an accountant (one of the few trades arguably duller than psychiatry) who has died before the story starts. So — if Ms Pushcart Prize doesn’t like it, she can quit going into the hospital.

We thank you for you thoughts, prayers, and support. We invite you to celebrate this homecoming with us.

–Allan

Wednesday, April 07, 1999 12:09 PM

Hi -

Well, maybe this is the “catastrophic change” mentioned below. Apparently, some folks got the following note and others didn’t. So — if it’s redundant, you have the chance to be happy twice. If you hadn’t received it, I offer my apologies.

[April 05, 1999 e-mail message inserted here]

Julie has left the [hospital] building.

–Allan

Julie’s Story

Next Installment: Julie In Hospital In June 1999 – E-mail Notes & More
Previous Installment: Julie – November 21, 1999 Status Report
First Installment Of Julie’s Story: This Is How A Love Story Began

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.

_____________________

1. 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. [↩]

Monday’s post was a commemoration of Julie’s birthday;¹ today’s post, providing symmetry of a sort to the week, is another (and the final) report on her health status. I originally emailed this note to friends and family November 21, 1999, less than two weeks before she died. Those who have read the earlier health reports I’ve posted² may correctly notice that in the following post, I am significantly more active in dealing with doctors and the healthcare institutions. It was only at this point that Julie could no longer serve as her own primary advocate, a role she insisted on handling as long as it was possible.

To Our Family & Friends:

My pervasive vigilance for eleemosynary opportunities, complemented by my well-known civic pride, has led me to alert the Crystal Lake Chamber of Commerce to the potential advantages of changing the city motto from the admittedly provocative

Crystal Lake: A Town Built Around a Lake of the Same Name
What Are the Odds of That Happening?

to an arguably more tourist-friendly:

Crystal Lake: Lourdes of the Midwest

Yep — Julie has now put together two or three good days in a row (if you are willing to accept a rather liberal interpretation of “good day”). While she is still bedridden, she reports feeling stronger subjectively. The only cognitive defects she now displays in routine conversation are a distinctly liberal bent to her politics and a similarly incomprehensible (to me) trust and confidence in others. She is eating more and has decreased her minimum sleep requirement to 10 hours a day.

The blood samples, drawn earlier this week by one of the dialysis nurses who spontaneously vaulted far beyond her job description to trek out to the hinterlands without benefit of Sherpa, were not catastrophic (“not catastrophic” is the equivalent of “perfect” in the weird world of Julie’s labs). Her hemoglobin and hematocrit have, however, declined significantly despite the infusion of three units of blood in the past two weeks.

In a passive-aggressive frenzy, the HMO gatekeeper, (in fact, Dr. Cerberus is a fitting alias for this physician, who, if she knew what was good for her, would operate exclusively under a false identity) who apparently felt under duress, begrudgingly approved the bone marrow test Julie’s oncologist recommended.

Of course, “approved” is used in the preceding paragraph in a purely technical sense, as in “all right, all right, get the bone marrow if you think it’s so important.” As it turned out, we indeed thought it was important, having established a long-standing bias to choose the life side of the coin when faced with life and death decisions. Go figure.

In keeping with her usual M.O., Julie somehow arranged to have the test completed 18 hours later and handled the procedure without a flinch. I was a tad more reactive. Julie’s was the third bone marrow aspiration I had observed; the first was one I watched as a fourth year medical student and the penultimate was one I performed 20 minutes later, using the sternum of an adolescent boy as a site. I plan to submit to the New England Journal my version (inevitably to be known as the Showalter Variation) which transforms the old medical school bromide, “See One; Do One; Teach One” to the more managed care-compatible “See One; Do One; Wait 20 Years; See Another One.” Julie’s results should be available next Tuesday or Wednesday.

The healthcare bureaucracy, however, remains invulnerable, inflexible, and incomprehensible. Having reluctantly acceded to Dr. Cerberus’s recommendation that Julie enroll in the hospice program, a recommendation accompanied by specific assurances I wrung from her that the hospice staff would handle the dialysis needs and any blood transfusions necessary, we found, of course, that ongoing dialysis and blood transfusions are automatic reject-criteria for hospice programs.

After some research, I have discovered that these (and many other odd criteria for hospice admission) are derived in toto from the concerns of the US legislature and federal healthcare agencies that allowing these procedures as part of hospice care would result in folks living past their actuarial tables predictions of no more than six months in the hospice. Damn cheaters. This fact is made clear by the review process offered: “… such patients may be eligible for the Medicare hospice benefit if the documentation by the physician shows sufficient evidence for a prognosis of six months or less in the absence of meeting the criteria in these policies.”

I’m thinking of offering the hospice, in return for a waiver of these requirement, my guarantee that Dr. Cerberus will not live more than six months.

After my prolonged, occasionally loud but only rarely profane motivational session, the sincerely sympathetic hospice folks have agreed to petition our HMO and ultimately Medicare for an exception to allow Julie to receive hospice nursing services in the home while maintaining her dialysis. Results from this effort should also be available next week.³

Because of the problems with hospice qualifications, I requested Home Health Care, a benefit Julie has under our HMO policy and Medicare. After pleas from me, Julie’s oncologist, Julie’s nephrologist, the hospice, and Uncle Vito, Dr. Cerberus relented and ordered in-home services. This victory, however, was illusionary because it only moved the battle from the HMO physician (who appears to have a residual fragment of shame and is thus less than the guardian she should be) to the HMO physician’s “referral specialist” (whose strength, if not that of 10 men, is that of the Three Stooges and similarly dependent on obliviousness to the real world).The Referral Specialist left word that Julie did not qualify for Home Health Care because she “has no rehab needs.” My assumption is that the reference is actually to the requirement for skilled nursing care (loosely defined as services that only an RN, Occupational Therapist, or Speech Pathologist) could provide. The contention appears to be that

1. Attending to that dratted twice daily peritoneal dialysis that disqualifies her from hospice is well within the purview of the guy on the street (come to think of it, the guys on the street have been more helpful than the HMO)
2. The twice weekly Epogen injections (to stimulate blood cell production) could perhaps be assigned to the cleaning staff
3. The phlebotomy skills involved in drawing blood from Julie’s long since invisible veins would be a nice addition to my mother’s needlework repertoire
4. Teaching Julie to compensate for the impairment to her speech caused by the paralyzed vocal cord can be left to Julie’s mother (well, she taught Julie how to talk when she was two; she can do it again)

So, I succumbed to the most desperate of steps, what the geeks amongst us refer to as RTFM (Read The F**king Manual). The fine print yielded the information that the Medicare definition of “skilled nursing care” includes specialized staff teaching us how to move Julie in a manner that causes her less pain than, say, having her bone marrow aspirated, an audit of potential danger spots in the house, and occupational therapy to help to become more independent in dressing herself, eating without being fed, etc. When I contacted the local Home Health folks, it became clear, in fact, that they assumed that I just wasn’t clear in explaining Julie’s needs because “all this stuff is covered — all you have to do is tell the doctor.”

On a considerably happier note, both Julie’s mother and my mother (AKA Da Momz) are staying with us and have proven incredibly helpful, not only taking care of many tasks (e.g., grocery shopping, pharmacy runs, transporting Da Boyz to doctor’s appointments, and so forth) but also being always available to buoy Julie’s spirits and, consequently, mine. The drawbacks to having both maternal figures in-house are manageable (it will no doubt be reassuring, for example, to have enough victuals on our Thanksgiving table to feed McHenry County for the first three months of 2000 if the Y2K event wipes out all food transportation and production).

Julie’s sister and her family are arriving later this morning for a one-day stay. Julie’s improvement, alas, does have a dark side since she now has the increased perception necessary to notice signs of impending squalor and the enhanced psychological energy to nag me into making the place presentable to her visitors. So, I need to change from my candy striper’s uniform into my maid’s outfit.

– Allan

Julie’s Story

Next Installment: The Hospital Epistles: March – April 1999
Previous Installment: Uncompromising Faith, Unremitting Hope, Unyielding Love
First Installment Of Julie’s Story: This Is How A Love Story Began

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.

_____________________

1. 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. [↩]
2. Uncompromising Faith, Unremitting Hope, Unyielding Love and The Hospital Epistles: May 1998 [↩]
3. This effort was successful and, at least at that time in our Medicare jurisdiction, unique. The Hospice workers proved to be as close to angels as anything I expect to find in this life. [↩]

Introduction

Except for the time period covered, this post is similar to The Hospital Epistles: May 1998, and I will preface it with the same explanation and apologies: This is a collection of emails I sent our family and friends to let them know about Julie’s¹ condition during her hospital stay from September 25 to September 30, 1999. This correspondence was composed on the run and is recorded here as it was originally written, so it contains 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.

The difference in the dates covered is, of course, not trivial. Julie would die just over two months following discharge from this hospitalization.

The Email Report Of Julie’s September 1999 Hospitalization

25 Sept 99
To Our Friends & Families –

Julie has again been admitted to the hospital. After a month long siege of coughing, shortness of breath, nausea, and weakness that did not respond to routine symptomatic treatment, Julie was seen by her physician two days ago. At that time bronchial asthma was diagnosed and an antibiotic and steroids were prescribed. This regimen initially seemed effective; the period from late Thursday to Friday afternoon was, in fact, the best she had felt in months. From early Friday evening, however, she experienced increasing difficulty breathing and her coughing exacerbated. After a sleepless night, we contacted the physician on call who recommended Julie be seen in the Emergency Room. The Emergency Room doctor required only minutes to determine that hospitalization was necessary.

The cause is not clear, primarily because there are so many possibilities, and the most likely answer may be “all of the above.” Because of her dialysis, for example, there are significant internal fluid shifts. A too aggressive dialysis dehydrates Julie to the point that she can’t stand or walk safely because of dizziness and her concentration wanes. Over-adjusting the dialysis formula the other direction pushes fluids into her body tissues, causing edema, high blood pressure, and fluid to settle in her lungs. The safe area between taking off too much fluid and not taking off enough fluid is, in Julie’s case, exquisitely small. Active tumor cells may secrete fluids that can accumulate in the lungs. Infections can have the same effect. Asthma and other disorders that restrict the airway may play a role. And, decreased cardiac strength can cause fluid to accumulate in the lungs. Each of these possibilities is being examined tonight. Moreover, there are numerous less likely causes (designated in medical school as “zebras,” as in — “when you see hoofprints, think of horses, not zebras.”) that may be considered if a primary pathology is not found among the leading candidates.

In addition, Julie’s potassium has fallen below the lower limits of normal, requiring that electrolyte to be added by intravenous drip. The lab tests that measure the oxygen carrying capacity of her blood have dropped to the point that transfusions are also planned for tonight.

That is the situation — in condensed, oversimplified form — as of 6:30 PM Saturday. Julie has consistently felt that those involved in our lives and care for her should be able to know, if they choose, about her health. I find no gratification in writing these notes — at least until she begins to recover — but feel compelled to convey this information and our profound thanks to those of you who have expressed concern, offered help, and prayed unceasingly for Julie.

–Allan

26 Sept 99
Good Evening,

Sometimes, it appears, a crisis is just a crisis, not a prologue to a life and death epic.

And, sometimes medicine is pretty simple:
Julie’s potassium is low? Give her potassium.
Her blood can’t carry enough oxygen? Pop in a couple of units of blood.
She has too much fluid such that some ends up in her lungs? Suck off some of the fluid.

And then …?

Well, then Julie feels a couple 100% better. She looks good enough, in fact, that she may be coming home tomorrow — although that clearly falls into the category of Possibility rather than Promise. Because the doctors who regularly care for her didn’t happen to be on call this weekend, explanations for what happened and why it won’t happen again will have to wait until tomorrow.

While maintaining my Midwestern suspicion that any expressions of joyfulness inevitably leads to compensatory horrors, I can find no way to avoid downright goofy expressions of felicity.

–Allan

27 Sept 99
Good Afternoon,

The jinx to which I referred yesterday or, more likely, the day to day fluctuations to which Julie is vulnerable, have resulted in a deferral of her discharge plans. When I saw Julie today, she was again having trouble breathing, requiring an oxygen mask instead of the nasal cannula at all times except while eating. Talking and breathing were accomplished in short, shallow gasps.

The discussion with the medical folks resembles the conversations I have with the phone company, computer tech support, school transportation, … and can be accurately characterized as “Well, there may be a problems but it is certainly not because of us [or any part of the body covered by our specialty]; what you need to do is talk to “The other guys.”

Despite the setback and the lack of specificity amongst the local healthcare cognoscenti, Julie maintains a cheerful demeanor and does not grumble. These characteristics of hers are, of course, exactly those needed to compensate for mine; this is why we’re a dynamite team. My capacity for sullenness, complaint, and nagging is, consequently, not only a gift but a responsibility.

As is obvious, things are more than a tad messy. What is clear is the love and concern so many folks have bestowed – appropriately in my view – upon Julie.

As we learn more, we’ll pass it on. My apologies for the abrupt note, but I have several calls to make.

–Allan

28 Sept 99
Good Evening,

I have little to report but such that I have is relatively good — if one shares our definition of “good” as the absence of anything horrible. All the docs agree that Julie is doing better. The Pulmonary consultants are taking an almost proprietary pride in her lungs as they improve; the Nephrologist has conferred her blessing on the dialysis results. Julie’s Internist (AKA The Gatekeeper) has loosened the HMO pursestrings, unleashing on Julie the full impact of modern medicine — not an unmixed blessing.

The not so great news is that no two physicians agree on the likely cause of this exacerbation, and no one is volunteering much of a guarantee that the same problems won’t recur or any ideas about what to do to shift the odds in Julie’s favor. And, Julie is still dependent on supplemental oxygen and often finds herself gasping for breath.

I was privileged to be present for the only excitement of the day. A nurse, apparently immersed in the medical philosophy rampant when I was schooled — see one, do one, teach one — was in the midst of changing Julie’s oxygen tank when she suddenly realized she had skipped the “see one” step. Even before I had a chance to play doctor (I didn’t even get to the preliminaries of ordering the nurse to bring me the patient’s chart and a refreshing beverage), Julie, bless her heart, noted the error, instructed the nurse to either set it correctly or, if she didn’t know how, to get someone who did. Yeah, I checked the nametag; it really was Julie. I now suspect her so-called illness to be a cover for her surreptitiously attending medical school.

Julie is grateful for the e-mails, the phone calls, the good wishes, the prayers.

Me too

–Allan

PS I don’t think I’ve mentioned the address in this series of messages, but Julie is hospitalized at

Alexian Brothers Medical Center
Room 549-2 850
Biesterfield Rd # 3010
Elk Grove Village, IL 60007

The Phone number is (847) 437-5500. After the automated voice mail picks up, just dial “1,” then “2,” and then “”549.”

29 Sept 99
Good Evening,

As was true yesterday, I have little new to report. Julie’s lab results continue to look better than she does. Her breathing remains labored, and she has little energy. Her Internist and I are playing telephone tag; at this point Julie and I lack a clear picture of future diagnostic workups or treatments. From my experience as a doctor and as spouse of a patient, however, I suspect the bottom line of the clinical plan is something along the lines of “wait and see.”

As for Julile & me, our own plan consists of
Uncompromising Faith, Unremitting Hope, Unyielding Love

–Allan

30 Sept 99
Good Morning,

It seems that almost everyone who is anyone has a law named after him or her: Moore’s Law, Ohm’s Law, Murphy’s Law, … . I’m now proposing the Showalter Law of Physician Response Capacity :

This morning, for example, I left a message for Julie’s Internist and had almost replaced the phone back in its cradle when that very individual rang through responding to my call. (Well, I suppose to make the formula complete one should factor in the Showalter Threat to Harassment Ratio Corollary, but that’s for another time.)

Where was I? Oh yeah, turns out Julie is scheduled to return home tonight.

The smart money among the docs treating Julie is on a cardiac problem as the major issue leading to this hospitalization. Med-Speak aside, it looks as though the strength of her left ventricle, the part of the heart muscle that is responsible for pumping blood throughout the rest of the body, has been weakened (probably by a past course of chemotherapy). The decrease in pumping power, in combination with some degree of overhydration when the dialysis formula was changed, resulted in fluid in the lungs and the respiratory problems. By using highly concentrated (hyperosmolar strengths if you recall those lectures on semipermeable membranes in high school science) dialysis fluids, much of the fluid in her body was drawn off. The dialysis will continue at home, of course. Julie is now taking medications to strengthen the heart and other drugs to decrease the resistance to the flow of the blood throughout the body. She will return home requiring oxygen (with an impaired heart and suboptimal lungs, her blood cannot carry enough ambient oxygen without a bonus portion being pumped in mechanically).

So, Julie is weak, still has a cough, and is the possessor of an extraordinarily dry mouth from running oxygen through her nose continuously.

She asserts she has never felt better.

That is the situation as of 8:45 AM this morning. While discharge plans are always subject to change, Julie and I have decided to celebrate whenever we can. Feel free to unleash the confetti, sound the trumpets, unfetter your happiness, join the dance of life, raise a joyous noise, or initiate whatever other ceremonies you designate for commemorations of Julie’s happiness.

–Allan

Julie’s Story

Next Installment: Julie – November 21, 1999 Status Report
Previous Installment: The Hospital Epistles: May 1998
First Installment Of Julie’s Story: This Is How A Love Story Began

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.

_____________________

1. 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. [↩]