Julie’s Story: 17. Uncompromising Faith, Unremitting Hope, Unyielding Love

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’s 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

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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

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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 brusque note, but I have several calls to make.

–Allan

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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 purse strings, 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 name tag; 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

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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 Julie & me, our own plan consists of

Uncompromising Faith, Unremitting Hope, Unyielding Love

–Allan

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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 :

The time required for a given doctor to return a telephone call from a patient or a member of a patient’s family is inversely proportional to the likelihood that the news he or she has to impart will be what the caller wants to hear.

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 Intensity Multiplier, 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

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Julie Showalter

Julie Showalter was the fiercely intelligent, sexy, and loving woman with whom I had a outrageously wonderful marriage that ended with her death in late 1999 from cancer diagnosed the week of our wedding nearly 20 years earlier. She was also a brilliant scholar, the mother of our two sons, and a prize-winning author. Many posts on this blog are about her and still others consist of her writings. Julie’s Story is the account of our unlikely romance, Information can be found at Julie Showalter FAQ.

Julie’s Story

All posted chapters can be accessed at Julie’s Story

 

Note: Originally posted Aug 2, 2006 at 1HeckOfAGuy.com, a predecessor of AllanShowalter.com

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