Defining the Anxiety

It was a little after high noon when Great and Wise stepped into the room.  He looked at Marty and said, “You look a lot better than I expected.”  That was Friday a week ago.

That Thursday afternoon Marty and I took a ride as we often do.  She had refused an outing to replace her glasses saying, “It takes too long and I have to try on all of those glasses.  It’s a pain.”  Maybe I missed something when she didn’t want to go get glasses.

That night, Thursday night, all seemed well, she bathed, she laughed, she coughed.  At bedtime things seemed a bit off.  It’s really hard to describe but her body was doing things she didn’t want it to do.  She was stretching in a peculiar way, just for a couple of seconds, her body contracting while she made a yawning noise.  

It was enough for someone with a Doctor of Marty to know things just weren’t right.  I’ve seen it before; her body’s reactions were a nebulous indicator of something different, something worse.

Sleep wasn’t easy for me that, I knew something was off.  I got up a couple of times to check and Marty was sleeping comfortably.  By the time the sun started to rise I was up and had already decided we were going to take Marty to our friendly neighborhood emergency room.  Things just felt off and I don’t do off when I can keep from it.

Erica, Marty’s a.m. caregiver, got her dressed and did her vitals.  Her blood pressure was now uncomfortably low and she clearly didn’t feel very good, though she would never admit it, the hospital is not high on her list of places to visit.  The hypotension confirmed my earlier decision to take the ride to a higher authority.

We made a Presbyterian type trip to the hospital, meaning we got ready, “decently and in order”.  We gathered our supplies, documentation, got our “go” bag, got cleaned up and went to the emergency room where they immediately moved us to triage.  When the triage nurse saw her blood pressure was 90/55 they immediately rolled her back to an exam room with Erica and I shuffling behind.

Within in minutes they were hooking Marty to an IV for fluids and blood tests, had her on supplemental oxygen and communicated her vitals and medical history to the ER doctor.  Within 2 hours we had seen her blood pressure move up from 85/55 to high 90s/60s, we had determined she did not have pneumonia, we had ruled out a UTI (I would have lost a bet on that one), but had discovered she had a whale of an infection as indicated by a very high white blood count.

I think it always kind of freaks the Docs out when I ask a lot of questions and want details and numbers.  I want to know what her white count is, not just that it’s normal or not, I want to know what her Sodium levels are, not simply a recitation of everything seems normal.  I’ve been there, we’ve been there, I know, the numbers give me data, the data gives me knowledge and the knowledge keeps me calm.

Ultimately the diagnosis, like so many diagnoses, was vague:  upper respiratory, sinus, some bad infection leading to systemic inflammatory response syndrome (SIRS) or sepsis.  Now there are several stages to sepsis ranging from pretty sick to really damn sick.  We were early enough to get to pretty sick.  Had we waited longer to seek help  we would have rapidly made it to really damn sick.  This is my nightmare.

When Great and Wise stuck his head at noon he looked at Marty and told her there were too many unknowns and we needed to stay in the hospital.   I agreed, like that made a difference, Marty disagreed, that didn’t make a difference either, we were destined for a multi-day hospital stay.

She really did look good, her color was good, her demeanor was good, but her blood pressure was scary low, all of the diagnostic tools indicated she was really pretty sick.  Great and Wise also said he was leaving town for a much needed respite to go see his family.  I said yeah and boo at the same time.  Yeah for his much needed to time away and boo for us to be relegated to the ubiquitous hospitalist.  

Great and Wise is the only Family Practice Doc I know that follows his patients in the hospital and we missed him.  I personally think he leaves every now and then to make us appreciate what a good medical deal we have.  He succeeded, we love us some Great and Wise.

Marty spent the next four days in the hospital getting fluids and IV antibiotics.  God bless the people who discovered penicillin and the people who expanded the use.  I know they are often over used, I also know they have saved millions upon millions and I really know they have saved Marty more than once.

Marty was not happy to be there, she really doesn’t like it at all for a lot of reasons.  If you ask her why she doesn’t want to be there you get the usual loss of control, like to be at home, poked and prodded too much answer.  She told me right after the delicate and demeaning  in-and-out catheterization to obtain a urine sample, “You wouldn’t believe what they did to me down there.”  Yeah, I know, I was there.

The hospital ain’t for sissies or the easily embarrassed.  It is the place where, if you are lucky, watch, wash, and follow directions you can leave better than you arrived.  That’s what we did last Monday.  We came home.

She’s better today than she was yesterday, she’s much better than she was when we drove to the emergency room in the cold early morning, she’s not as good as she will be with more time.  She hates going to the hospital, she annoyed that I made her go, she was a bit perturbed while there and I think she’s still just a tad bit ticked about the whole thing.  

She also knows it was the best and only thing to do.  I know it was the best and only thing to do.  This could have been so much worse, if we had waited, it would have been worse.  I worry that some day we will not see the signs in time.  It’s what keeps me up at night; this is what defines my anxiety. 

Wanted - Clean Pee

It feels like we live our life on a knife’s edge, balancing between our new normal of nominal and normal health issues with the accompanying low levels of anxiety and the jacked up concern and hyper vigilance   associated with very real, persistent infections.  

Oh yeah, it’s hyperbole to use the knife’s edge imagery but I’m living this and I can be hyperbolic if I want to….”It’s my party and I’ll exaggerate if I want to…”

Today, balancing on that knife’s edge, Marty has one more in a series of urinary tract infections.  We had evaded this particular malady for several months only to have fought it four or five times over the most recent months.  

Urinary tract infections scare me, for a lot of reasons.  For someone in Marty’s condition they can be really debilitating.  It makes her tired, weak and at times a bit confused, in other words they make her sick.  All of the infections that are somewhat omnipresent to the chronically are disconcerting but UTI’s are sneaky, hard to discover and can be deadly if not treated properly.  That’s not hyperbole. 

It’s a catalyst that moves us back to a time where I obsessed daily over Marty’s health and the potential for catastrophic illness.  That seems like a life time ago.  Then a sequence of events brings dark days, fears and the reality of chronic illness back to the forefront of our lives. 

We have been to get the advice of Great and Wise a couple of times and I am reminded, every time we darken his door, every time he kisses Marty’s cheek, every time he offers wisdom and comfort, how fortunate we are to have access to outstanding, compassionate  medical care.  Marty would not be here without it.

In our most recent trip I asked Great and Wise about the potential cause of the UTIs, if he could tell from the type of bacteria identified if it was a hygiene issue, maybe we are doing something wrong.  Something has changed and we need to cover all of our bases.

His response, “Almost all UTIs are hygiene issues, they just are.” 

I’m sure he is right, I’m pretty sure he right in Marty’s case, I’m pretty sure he’s right when you think about how the female body is constructed, so wonderfully tantalizing, so inefficient, so susceptible to bacteria.  The whole hygiene issue is much worse with someone who has suffered the strokes Marty has.  It’s a problem.

The hygiene thing is a pretty delicate subject and to preserve some of Marty’s dignity I have intentionally avoided pulling the curtain back on that part of our life.  But, to quote my delicate bride, “the dignity train left the station a long time ago.”

Since the 2^nd stroke Marty has been incontinent.  It’s something I know she hates but she just plain and simply deals with the indignity of having people care for her in that way and accepts the process for what it is, a necessary evil.

Everyone who cares for Marty, all of her caregivers, me, we work at doing our jobs with respect for her and her privacy.  For Marty and me, well, we try to find some humor in the whole process.  I have learned a lot more about things, down there; than I ever thought I would need to know.  It’s one of those deals where if I knew then what I know now I would know a little bit better where the right buttons are on that mysterious female body.  Anyway…we joke, we laugh, she laughs and promises she would do the same for me if it ever came to it.

Part of the UTI problem is the same issue with any medical problem Marty may have, she can’t self-diagnose and she can’t really help me with the diagnosis.  She doesn’t really know she is sick; UTIs can be sneaky like that, especially for someone who is compromised in anyway.  It’s only when we notice other symptoms, lethargy, confusion, smell, that we know something is amiss.  Then we have to figure out a way to get a clean urine sample.

We have found a couple of ways to achieve our goal of clean pee, but any clean urine sample, regardless of how much or how little, is hard won.  I have found a couple of things on the medical equipment market that allow us, with a little work, some scissors, glue and a sense of humor to do the trick.   We have all of that plus a medical support system that allows us to drop off a sample in the ubiquitous grocery bag at any time.

Right now Marty Jean is on antibiotics, again.  We know which antibiotic because Great and Wise told us the right one based on the cultures.  That’s the good part.  I worry about Marty always taking antibiotics, I worry that sometime it won’t work or that we will miss something and will wait too late or we will have to go the hospital because the antibiotic is no longer effective.  Those are just a few of the bad parts.

We will continue to search for reasons Marty is now getting these recurrent infections.  The caregivers are all aware of the need for care in hygiene, I’m aware of the importance of caring for Marty properly.  We will figure it out, just like we always have.  

I worry, that’s my end of it.  I worry about the knife’s edge and which side our life will fall on any particular day.  Marty’s end is a lot harder; she has to suffer through real indignities that most of us would never accept.  

Being sick is hard, it’s not for the faint of heart or easily embarrassed.  It’s what we have to endure; it’s what the people who love us do for us when we can no longer do for ourselves.  It’s the very real dirty part of life.