But he knows the way that I take; when he has tried me, I shall come out as gold.
~Job 23:10~
I really need to get better about posting entries in this blog,
but honestly, I am often so overwhelmed with fatigue and weakness, the very
notion of being able to put two coherent sentences together is more than I can
do, and I give up before I even get started. Nevertheless, today I am putting
pen to paper, as it were, because I have much to share since my last entry. I
apologize in advance for the length of this particular post…I really wish I
could write short little entertaining synopses of my days like I see in so many
blogs I read now and then. But for those who are praying with me and for me,
wondering what is going on when I am silent, transparency is an important part
of our journey together. And frankly, that means that every now and then, it
takes a lot of words to paint a picture that isn’t always entertaining or
pretty. Besides, ask anyone who knows me well and they will tell you…I tend to
be a wordy person anyway, so what can I say?
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| The majesty of the mountains is breathtaking |
2016 ended with a wonderful Christmas trip (which meant
driving through two major snow storms) to beautiful Pagosa Springs, CO
to see Gary’s youngest daughter and her sweet family. We had a lovely time, and
look forward to going back in the early summer, when it isn’t quite so cold and
there isn’t quite as much snow. I did get some wonderful pictures of the
mountains…both beautiful and awe-inspiring…a sight that always makes my breath
catch in my throat. And the time spent with this precious family that we love
so much was absolutely worth the “white knuckle” drive it took to get there and
back.
2017 began with hope that this will be the year that things
turn around for me, but as each day has melded from one to the next in a
virtual blur, I have begun to wonder if my optimism was, in fact, unfounded.
Not that I have a sense of doom overshadowing my foundation of joy, I don’t.
But the reality of it all is that nagging concerns about increasingly abnormal
lab results over the last several months, excessive fatigue, and weakness on
top of constant pain cannot continue to be ignored. I have a really bad habit
of saying to myself, “it will get better soon…all I have to do is push through,
and everything will be okay”…but everything is not always okay, no matter how
much I will it to be.
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| With Aimee on day two of cruise, first formal night |
Since we enjoyed such a lovely cruise with my oldest
daughter and her husband in October, we decided to plan another one in January
with my youngest daughter and her husband. I had been looking forward to it,
and couldn’t wait to spend sweet one-on-one time with them. We sailed out of
Galveston on Sunday, January 22, 2017, and the week held great promise of
beautiful weather and smooth sailing. But on the first or second day, I noticed
a blue knot on my right leg about the size of a half-dollar that was painful in
a deep, aching way. I couldn’t recall hitting it on anything, and while I was
concerned about it, I didn’t consider it serious enough for me to do much more
than watch it, albeit somewhat warily. It wasn’t red, it wasn’t hot…just a blue
knot within a vein. My feet were purple and swollen, but then they always are
unless I elevate them, so I didn’t consider that anything out of the ordinary.
But a dear friend of mine had just recovered from some clots in her leg, and
since I am at high risk for them myself, the thought of her experience kept
some concern in the back of my mind. I was determined, though, that I was not going
to worry too much. After all, we were on this cruise to relax, have fun, and
enjoy time with our kids. On Thursday night in the middle of the night,
however, I woke up with a pain in my chest so severe, it felt as if someone had
hit me with a brick. I was short of breath,
my heart was racing, and pain gripped me with every breath. As I so often do, I
told myself, “it will get better soon…all I have to do is push through, and
everything will be okay”. But I wondered if somehow I had developed a clot in
my lungs; on the other hand, I had trouble believing that something that
serious could possibly be happening at that moment. All I had to do was stay
calm and things would line out. I was sure of it.
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| The pier shopping area in beautiful Cozumel |
We had planned to spend time with Mike and Aimee the next
day (Friday) in Cozumel, but I was still struggling to breathe and was not
feeling well at all. We made our way around the little shops near the pier and
after a few minutes, I had to go back to the ship to rest. By Friday evening, I
had chills so severe, I couldn’t control the shaking; after asking the
stateroom attendant for extra blankets, I went to bed. I awoke again in the
middle of the night with bone-wrenching coughing, racing heart rate, high fever,
and stabbing pain accentuating every breath. By now I knew…without a doubt…something
was very, very wrong. I promised Gary that first thing the next morning, I
would go to the ship’s medical center to see the doctor.
Saturday morning, still racked with pain and high fever, I
saw the ship’s doctor, who ordered a chest x-ray (which revealed pleural
effusion) and flu screen (which was negative); she ultimately diagnosed me with
probable pneumonia with pleural effusion. She started me on IV antibiotics and
sent me back to my stateroom to rest. I didn’t argue with her because I was
absolutely miserable. How could I possibly have gotten so sick? I never thought
I would say this because I usually don’t want a cruise to end, but I really and
truly wanted to go home. I was extremely relieved that I had the foresight to
have coordinated some doctors’ visits to coincide with the end of our cruise,
and was happy to see them both first thing Monday morning. Both doctors agreed
with the ship’s doctor’s diagnosis of pneumonia with pleural effusion.
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| Progression of weakness and illness in just a matter of days |
I was extremely weak, so my neurologist reluctantly agreed to
allow me to get my IVIG treatment on Tuesday, as long as I could get my fever down
below 101 degrees. We both expressed hope that the treatment would not only
increase my muscle strength, but help me fight the infection that was causing
me to be so sick. We then made the 300 mile drive home, and I fell into bed. I
was so sick, I didn’t care that there were loads of laundry left undone and
suitcases I had no strength to unpack. I did a lot of praying that night,
because the night before, my temperature was 103.3, and I’d not seen fever as
low as 101 since Friday. But thankfully, when I woke up on Tuesday morning, my
temperature was 100.8…low enough to proceed with my treatment. Out of sheer
exhaustion from days of fever, sleeplessness and pain, I slept through the
entire infusion (which takes all day). Later, I had a difficult night, alternating
fragmented sleep with coughing spells, hard chills, and sweats.
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| Incapacitating weakness is rearing its ugly head |
By Wednesday afternoon, my temperature was back up to 102,
and I felt as if I were drowning in the fluid in my lungs. Myasthenia Gravis
can cause muscle weakness so severe that the chest wall muscles and diaphragm can
no longer work hard enough to help cough up secretions, and since I was getting
weaker by the moment, my night was again fraught with sleeplessness and a
seemingly fight to the death just to breathe. The next morning…one week after
my symptoms began…I went to the emergency room. Surprisingly, I guess because I
had been on both IV and oral antibiotics for 5 days, a chest x-ray revealed no
pneumonia nor any remnant pleural effusion. However, the astute doctor,
suspecting a pulmonary embolism, ran a gamut of blood tests. The results to one
of those tests, a D-Dimer test (which can be elevated when a blood clot is
present), was very abnormally high. Concerned about my condition and believing
that I needed special testing to rule out a pulmonary embolism, she transferred
me via ambulance to a local hospital, where I was admitted.
I will always be
grateful to that doctor for her diligence because we discovered a blood clot in
my right leg via Venous Doppler, and the attending physician made a presumptive
diagnosis of a pulmonary embolism, based on symptoms and highly elevated
D-Dimer. More than likely, the spontaneous hematoma I had noticed in my leg had
released a couple of clots, which landed in my lower calf and in my lung. In
addition, lab values which we had been cautiously watching spiral downward over
the past months were alarmingly low, and a Hematologist joined my medical team,
along with an Infectious Disease Doctor and a Gastroenterologist. Together,
they diagnosed me with Deep Vein Thrombosis, a probable Pulmonary Embolism, Atypical
Pneumonia, Anemia, Neutropenia (severely low white counts which put me at high
risk for any infection that comes my way), and exacerbation of my Myasthenia
Gravis. I was so weak, I could scarcely speak, swallow, or hold my eyes open or
my head up.
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| I finally got out of the hospital gown and into my cute pj's! |
I began treatment to dissolve the blood clots, and for the first
two days was on strict bed rest. I was in isolation until I was cleared of the
possibility of having Tuberculosis, and when the isolation was lifted, I was
thrilled. I hated that my visitors had to go to a sterile room and don
protective masks, etc. just to be able to sit with me and visit. I guess I
rejoiced too soon, though, because I was immediately placed in isolation again;
this time, to protect me from other people’s germs because my immune system is
so completely compromised. I had a GI workup, looking for a bleed to explain
why I am so anemic, and when that was clear, I received IV iron infusions on two consecutive days. We still do not know the root cause of the anemia or the
neutropenia, and I may end up having a bone marrow biopsy, though I am not sure
when that will be. I spent 6 days in the hospital under the care of this
excellent team of physicians, and am currently working with them to find
answers and to get my conditions under control. Unfortunately, though, until my
insurance approves some special iron infusions, I have to wait. It has been a
full month since this setback began, and though my lungs are better, I
continue to suffer from weakness, pain and extreme fatigue. Meanwhile, my lab
numbers continue to drop.
We lost a Myasthenia Gravis Warrior this week, which hit me really
hard. Wendy was a mentor, a friend, a source of encouragement, wisdom,
information, support and empathy. We were in a couple of online support groups
together, and she was one of the first to reach out to me when I first joined
the Myasthenia Gravis group. She never failed to respond with knowledge and
caring to anyone and everyone who posed a question to the group. If someone was
hurting, Wendy was there to lift up and encourage. I can’t believe she is gone,
a victim of a poor health care system in the state in which she lived, denied
the very care and treatment she so desperately needed. She and I are the same
age, we have many of the same conditions, and her loss shook me to my very
core. Wendy had a huge impact on my life and my walk with a primary immune
deficiency and autoimmune diseases, and I will remember her always with
fondness and high regard. In fact, I am a better person for having known her.
Thank you so much for your prayers and your support…each act
of kindness, every visit, each text or phone call to let me know you are
thinking of me, each word of love and encouragement…means more to me than words
can express.
God bless you, I love you…
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