Life
is a series of many, many adventures that stitch together as part of the journey
through life. Some of these adventures
are ones that I share with those around me.
Then there are the adventures that cause me to feel like I have been
stranded on an island without any resources.
Today I decided to write about an adventure that is beginning to unfold
before me. One that started out with me
feeling lost and alone after a shipwreck.
I'm
pretty sure you are fully aware that I am not a doctor; however, just to be
clear, I AM NOT A DOCTOR. My motivation
for writing about this is to encourage you through your journey through life,
to remind you that your body is YOUR body - YOU have to advocate for your
health. I also want to talk about the
importance of recognizing when the fear of bad news causes MUCH more damage
than hearing the truth will cause.
I
am no stranger to the challenge of the weight gain/loss yo-yo. I have struggled with my weight most of my
life. It seems that, real or imagined,
the older I get the harder it is to lose weight, regardless of my diet and
exercise efforts. It has been incredibly
frustrating and disheartening. Over the
past couple of years I started talking to my doctors about why it is so
difficult for me to lose weight. The
responses have typically been along the lines of "Well, you just need to
watch your portion sizes" or "You just need to get more
exercise".
In
mid to late October, 2017, I started to notice increased asthma symptoms. The symptoms would improve and then appear
again. The week before Thanksgiving,
after lunch, I sat down in my recliner and took a short nap. When I woke up I found that I was struggling
to get a full breath, as if I had a weight sitting on my chest. Additionally, my fingers were so swollen that
I could not make a fist. My grandma had
congestive heart failure in the months prior to her death, and I had promised
her that I would take my health seriously … so I made an appointment with my
family doctor. During that appointment my
blood pressure was normal. The doctor
asked more family history questions, but was really focused on the fact that I
couldn't walk from one room to another room without becoming out of
breath. After a blood draw, a chest
x-ray and an EKG at the clinic I was sent to the hospital for a chest CT
scan. Those showed that I had not had a
heart attack, I did not have any fluid in the pericardial cavity (space around
the heart), there was no evidence of pneumonia and they also found no pulmonary
emboli (blood clots in an artery in the lungs).
Good news, so why was I still struggling to breathe?
The
doctor put me on Prednisone to help improve my breathing. While on Prednisone my breathing actually became
more labored and I felt, very much, like I had puffed up like a grape. I had read that staying hydrated helped reduce
the fluid retention caused by Prednisone - so I drank over a gallon of water
each day. My doctor's nurse called me on
the Monday after Thanksgiving to find out how I was doing. She scheduled an appointment for me for the
following day. That same day I figured
out that one of the ingredients in a product I had been using on my scalp contained
pine oil. As I was reading the
ingredients list I reached down and scratched my leg without thinking. The next morning I woke up to find that leg swollen
and covered in hives. It didn't take me
long to figure out what happened because I break out in hives when I come in
contact with pine. While I was talking
with my doctor I expressed a concern about how much I was drinking compared to
how much I was eliminating and that it seemed I was holding on to about half of
what I was drinking. The doctor noted that
I had some edema in both legs and said that it should correct itself after I was
done taking the prednisone. He then
ordered an abdominal x-ray and had me take Miralax to address mild
constipation.
I
knew that our church would have several poinsettias during the Christmas season
so I had started taking Benadryl to counter my allergy to poinsettias and
continued to attribute my breathing difficulties on that allergy. Just before Christmas I had an appointment
with my endocrinologist. He walked in
the exam room, sat down and demanded to know what was going on. I wasn't sure what he was talking about
because, except for the breathing I felt pretty good. He proceeded to tell me that I had gained 33
pounds in less than 4 months. I was
SHOCKED. I admit that, at some point, I noticed
that my clothes were getting tighter and a friend had commented that I looked
like I was pregnant. Even so, I was
shocked by this information. I was
expecting a lengthy conversation about my eating and exercise habits. Instead he wanted to know more about the
scans that my family doctor had ordered, then he made a call to get a copy of the
reports. We talked about the possibility
of Cushing Disease or other possible endocrine system explanations. He also made it very clear that he was not ok
with the lack of diagnosis. By the time
I left he had received the reports from the other doctor and told me to expect
a call from my family doctor. I also was
to collect a 24 hour urine sample to test my creatinine and cortisol levels to
rule out Cushing Disease.
I
think I was annoyed by the whole thing because I just wanted to be able to breathe
easily and enjoy Christmas with my family, instead I was an emotional wreck,
tormented by my fear of the unknown.
While I visited with my parents, I spent a lot of time resting and
talking with my folks. Some of our
conversations, coupled by my being down on myself for not being able to lose
weight prompted me to resume a food log, primarily tracking calories, which
showed me that I was eating an average of about 2,000 calories a day. Because my primary symptom was shortness of
breath, I kept thinking "I just need to start walking consistently again",
the problem being that I couldn't walk from the car to the house without
resting to catch my breath.
After
returning from Christmas break I completed the 24 hour collection and visited
with my family doctor. During that visit
I expressed concern about not really understanding why I was there. He pulled up the reports from both the CT
scan and the EKG and told me that both indicated that I have an enlarged heart,
so he thought it would be a good idea to follow up with an echocardiogram. Even though my blood pressure was normal, he
agreed that we needed to follow up on it.
If
you have never had an echocardiogram, it is really cool to watch! I was fascinated by it. I asked a lot of questions and when I asked
about what the red vs blue was, I made a comment about preferring purple … the
doctor chuckled and told me purple would be a really bad thing to see during
this scan! Before the scan began my
blood pressure was a little higher than normal, so they told me they would
check it again after the scan, assuming it would come down as I was just laying
down for the scan. For most of the scan
I was laying on my left side, until the very end when he had me lay on my back. That's when I felt the panic well up. I was already struggling to breath and being
flat on my back only makes breathing harder.
I hate not being able to control panic attacks. The doctor announced he was done and that I could
sit up. As I struggled to get my
breathing under control again they hooked up the blood pressure cuff and were
shocked that my blood pressure had gone up to 158/124! The doctor didn't hold me at the hospital,
but he did call my doctor's office. 40
minutes later I was at my family doctor's office because the nurse wanted to
check my pressure herself. It had gone
back down to 124/78. She also had
learned that all of the lab work ordered by the endocrinologist had come back
"normal".
While
the music team was practicing that Sunday morning, I was struggling to breathe
again and I started to feel a bit weak as well … I actually wound up sitting
down, on stage, during 1st service worship. Between services I was approached by two different
women, one who just wanted me to know she was keeping an eye on me and that I
was in her prayers. The other shared the
story of her mother-in-law, who had retained a tremendous amount of fluid in
her midsection before they find figured out that she was suffering from
undiagnosed ovarian cancer. Since I had
been diagnosed with PCOS (Polycystic Ovarian Syndrome) when I was in my late
20s, it seemed possible that a flair-up was causing fluid retention - but that
was just a guess. After church I had a
whole list of "stuff" I had wanted to do, yet all I had the energy to
do was curl up and take a nap.
On
Monday, January 8, my doctor's office called to schedule an appointment to
review the echo findings with my doctor and discuss 'next steps'. On Tuesday I met with the doctor who was
perplexed about why my blood pressure has been so consistently normal, yet the
echo had uncovered that my veins are not dilating properly. I asked him if this had anything to do with
the 33 (plus) pounds I had gained since August.
I told him about the food log and the average daily calories I have been
eating. His response was
unexpected. None of this
"weight" was because of fat or food … it was, in his opinion, fluid
and no amount of dieting was going to help.
He also told him that he wanted me to have the best care possible, so he
referred me to the Avera Heart Hospital (actually the clinic attached to it) in
Sioux Falls. That night I shared part of
my story with the ladies in my church group, I also reached out to a couple of
friends asking for prayers - and I prayed myself to sleep.
The
clinic had a cancelation for the next afternoon so off to another appointment I
went. Feeling bloated and out of shape,
I stepped on yet another scale and burst into tears. I had gained another 6 pounds in a day. In the past I have said some really mean
things to myself, things that I would never say to another person … this time
the only thing I could think to say is "help me get control of this". The nurse was very kind and told me that we
would figure this out together. Turns
out she wasn't even my doctor's nurse.
After a couple minutes my doctor's nurse came in and took a very
detailed history. She listened patiently
and assured me that I will not be alone in this. During our conversation she started listing
out foods that I should avoid. Most of
the foods she listed are already ones that I don't eat, or, at least I don't
eat often. Then she talked about deli
meats and most cheeses - not because of fat or cholesterol … because of sodium
content. WAIT, did you just say no more
cheese??? Really? Yes, she really said no cheese.
OK
MINDY, move on … you don't even know what the doctor is going to tell you, so
FOCUS (yeah, good luck with that).
The
doctor came in and asked me even more questions and listened to my heart and
then we talked about the 'diagnosis' … Idiopathic Cardiomyopathy … essentially,
based on the initial exam, none of the most common causes of cardiomyopathy
"fit" me. Somehow I'm not
surprised by this … there is very little about me that is "normal" so
why should this be any different?? The cardiologist
talked, at length, about the excess fluid I have been carrying around and why
it was interfering with my breathing. He
started me on Furosemide (20mg) and Lisinopril (10mg) to start getting the
fluid out of me and help my veins dilate as they are supposed to. In addition to the medications and limiting
excess salt consumption, I also need to weigh myself daily and phone the nurse
right away if I gain more than 2 pounds in one day. I am also wearing a heart monitor for two
weeks and then meet with the doctor to review the results. It's kind of cool because it also has a
button I can push when I experience symptoms that I, then, write down in a log
book at the two can be compared! I
started taking these medications on Thursday morning and by Monday (this
morning) I have lost 20 pounds, can walk up and down stairs without needing to
rest to catch my breath and feel better than I have felt in over two months!
One
of the verses we have been studying in Life Group is Matthew 5:8 "Blessed
are the pure in heart, for they shall see God." More than once, during this past week, I have
a cried when I start thinking about this.
The thought keeps returning: Jesus
is concerned with our spiritual center ... and it is our "job" to
make sure our physical center is cared for. I can't help but feel that I was led down this
path … each event had been set up in such a way that my faith would be
stretched and strengthened. If I had not
listened to my endocrinologist, I may well have been putting nails in my own
coffin. My fear of unknown potential bad
news could well have cut my life shorter than my Creator intended. As long as the fear of the unknown holds us
captive we will never find answers … once that fear is defeated the unknown
becomes known and resolution is possible.
One
other word of encouragement - even the best intentioned comments can be hurtful
if it based solely on surface information.
Don't be afraid to share your story - at the same time, don't feel
obligated to explain your health situation if you are not comfortable doing so. Please remember that you are not alone.
I
know I have a long road ahead of me and I am thankful for every day the Lord
allows me to have here on this beautiful blue marble. Thank you for being part of this journey.
