Health Update: Into the Woods
The way is clear,
The light is good,
I have no fear,
Nor no one should.
The woods are just trees,
The trees are just wood.
No need to be afraid there-
I have been trying to write a blog entry as a health update for some time now.
I do this for a couple of reasons:
1. To get the information out into the general knowledge
of my friends, family and
community accurately so I don’t have to tell and retell the stressful story
over and over. I learned years that if you don’t explain what is happening
people with fill in the blanks with crazy rumors and I prefer to share the
information myself.
2. The process
of writing helps opens the pressure value on the stress around all of the medical
stuff and stress greatly negatively affects my ability to heal so the writing
is part of a multifaceted treatment including meditation and other continuative
behavioral therapy (CBT) exercises.
I can't write fully about this one yet . . . physically it is hard to be awake for
more than couple of hours at a
time and many times when I am awake the medications have such hard side effects
I spend that time very sick or worse.
Also I think it is difficult because I am still in the middle of the
journey of it all. Usually I wait to write until I am on the downside with a
clearer head and view of everything.
This time I am standing in the middle of the forest and the tress are
tall and dark and the paths head out in multiple directions none of which are
clearly heading to the light.
So I will revisit all of this and explain some of the deeper
thoughts and feelings but for now here is the details to the best of my ability
– it has taken six days to get this written so it is what I got for now.
***Warning: the following post contains medical information
describing my condition; which is serious and not suitable for all audiences***
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| Me at O'Connor Hospital, both Girls had to get on he bed with me - Selah wanted to add to the healing |
The diagnosis is septicemia or sepsis, stemming form a
bacterial infection in my bloodstream that started as a urinary tract infection
that spread to a bladder infection and then into a kidney infection which
caused an abscess in my kidney which ruptured and sent bacteria into my blood
steam. Sepsis or septicemia is a
very serious condition, because the infection is in your blood stream as it
circulates through out your body it can easily cause your internal organs to
shut down.
I was hospitalized for five days and given huge doses of IV
antibiotics. The blood culture
showed I was positive for gram negative pantoea agglomerans bacteria. This
bacterium is known to be an opportunistic pathogen in the immunocompromised
patients, causing blood, and urinary-tract infections. Once I was stabilized, I was released into home
nursing care to continue IV antibiotics.
Gram negative bacteria in the circulatory system causes a toxic
reaction, resulting in high fever, low blow pressure, high pulse rate and life
threatening endotoxic shock, or in other words seriously bad infection.
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| Ellie in my hospital bed: doing her job |
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| Ellie is overjoyed to see Daddy. |
After a few days in the hospital I was released into home
nursing care. Where with the help
of home nursing care I would continue IV antibiotics for another 14 days. We have to monitor and track my vital
statistics every 3 hours – making sure my temp does not go over 101.9 – which
is our “go directly to the ER” number. The temperature is also a marker of how well the
antibiotics are controlling and healing of the infection. After the first round of antibiotics we
had to wait five days and then take a blood culture test. The blood culture revealed I had a
second bacterium that was more resistant now in my blood stream, which was
accounting for the continuation of the fevers. We think the CRE was introduced while I was in the hospital. Which is not uncommon and the main
reason why both my doctor and myself want to keep me out of the hospital and in
home care, away from more resistant bacterias.
We started a second round of more targeted and aggressive
antibiotics – the kind of antibiotics which come with side effects very similar
to chemo therapy. So I spend a lot
of my waking time with my head in a bucket or holding on to my service dog to try and
make the room stop spinning. The
side effects are harsh and the infection it self also has some difficult
symptoms – if you have ever had a serious kidney infection or kidney stone you
have some idea to the pain I have in my back. My right kidney has a 14mm abscess so it is inflamed and very unhappy. I have been through a lot of painful medical situations in the past and
this one is up there in the top 5 for miserable and terrifying.
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| Evening temp spikes |
I am starting my third round of antibiotics and getting care
from an infectious disease specialist because we are worried that the infection
is hiding in other organs. I am
exhausted all the time; my body aches all over, my back hurts very much from
the inflammation of my kidneys and I exist in a state of nausea. I am also stir crazy from not being out
of bed much. I sleep a lot. In the next week I have a large amount
of tests that will need to be done to try and locate where the pockets of
infection are hiding and that means multiple hospital trips and invasive
procedures. All of which I am very much looking forward too with as much glee and excitement as one in my state can muster.
My support team at home is great. My husband, Jeff is doing
wonderfully in helping my monitor and record my vitals and making sure I get
all my meds but he is also still doing all the full-time care giving chores of helping me when I can get food and trying
to cater to what things I might actually want to try and eat, which takes a lot
of time and work.
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| Ellie and Selah on duty : "get back in Bed MOM!" |
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| Ellie on the job - she takes taking care of me seriously. |
Ellie my Service
dog is working her butt off; she is glued to my side everyday helping me. There are so many
stories to tell about how she has helped me through this (I promise to write
about them when I am able). Selah
has also stepped in to be the sentry – she runs to bark and tell Jeff if I call
out in pain or the alarm on my IV pump goes off. Selh Jumps of the bed and runs of to bark, "Gwen has fallen down the well come quick come quick!"
But the burden of being a caretaker to a spouse who
needs this level of care is emotionally and physically draining. It is a hard thing to go through and it
is harder still to know how hard this all is on him and to understand that my
illness is the reason for it.
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| My IV pump - an older baxter model "the work horse": we hang my Banana bag (vitamins and 5% dextrose) on one side and the antibiotic bags on the other side. I also have PCA that is not pictured. |
I use humor to get through most hard times, in the beginning
I would joke about my condition having a higher mortality rate that Ebola. I thought it was funny . . .
considering the hospital still had Ebola warning signs up at the front door
stating it was certified to handle an outbreak if one should hit in small town CA this is where you come! like some odd advertisement. I saw those signs and found them hilarious. So the Ebola joke was for me a way of wrapping my head
around how serious this is, more viscerally than filling out the advanced directive
forms or having a doctor exclaim they are amazed I am stil alive for the
upteenth time. My little Ebola joke
was a way for me to get a handle on what was going on inside my body and what I
was fighting and why I had to be a good compliant patient and rest and do as I
was instructed. My little joke was how I was coping with it all.
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| One of my doses of "meds" I do this every 4 hours. |
Until the day I
quipped off my little Ebola Joke to a close friend and my husband turned to me with tears in his
eyes and said. “please don’t say that any more, I don’t want to hear that
anymore.”
“I am joking hun,”
I replied almost dismissively, “just
about the odds you know, like gallows humor”
From a still and stone expression as a single tear escaped
his steely gaze he said, “I know the odds, and I don’t think it is funny.”
He is right of course, it is not funny and we both know the
odds and we are still in the woods on this one.
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| All of the fur babies in bed helping with the healing: Ellie, Selah, and my cat Pax. |
I am told it will be some more weeks before things will turn
around and I am still strong and hopeful and in my fighting spirit. We are coping as best we can on this
one and we are lucky to have some amazing friends who come by to help with the
daily life maintenance stuff which becomes seemingly impossible with all that
must be doing with IV tubing and medication bags and injections – thinking
about sorting laundry and vacuuming floors feels like a far away luxury of
health. So we are blessed to have
the support of some really lovely friends who have come to help us keep
coping. And that is what we will
continue to do until we win this battle and trust me we will win this battle and walk together out of the woods,
cause that is what we do. We keep going, hand in hand like always with two funny little pups on either
side of us.
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| All of us |
That is all I can muster for now – I’ll fill in the blanks
later and continue to update as things change. Until then I’ll let Sondheim
take us home.
Into the woods,
Without delay,
But careful not
To lose the way.
Into the woods,
Who knows what may
Be lurking on the journey?
Into the woods
To get the thing
That makes it worth
The journeying.
Into the woods!
Into the woods!
Into the woods,
Then out of the woods,
And home before it's dark!
