Part of growing
in wisdom and maturity is getting to know yourself. How am I perceived by people? Does that match my perception of myself? Am I authentic in my interactions? Do I hide from people or myself? Is it hard to be around me?
I know
I am high maintenance.
When it’s
your own kids you call this “difficult” or “stubborn” or “strong willed”, or…”sassy”
and “opinionated” and I think I’ll just stop there.
I like
to think of it as being high maintenance.
Like a sports car (hopefully not like a bratty girlfriend). Sports cars need a lot of care to stay in top
shape but are fun to be around.
Expensive but worth it if you like that kind of car. (Only the best for
Josh, lol!)
I tend to expect a lot out of myself and when
something stressful is happening in my life I like as much information as possible. So, I pretty much love when I find a doctor
who will explain things to me, and I freak out when I don’t understand what is
happening to my body. Being diagnosed
with cancer was really hard on so many levels.
It devastated our finances and ravaged my body. But it also pushed me in ways I would have
never predicted in my emotional and spiritual life.
At various times
in my life I have been frustrated with pieces of the way God made me. Frustration with yourself can be really good,
it has helped me to change when I am selfish.
But frustration can also be a denial of what is, of the truth of our person, or the truth of our situation.
Being diagnosed with a life-threatening
illness removes the sense of control over your life. I get to decide what I eat today; I
decide what I wear; I decide what I read and watch and do. Even if we live our lives in service to
others it’s still our choice to serve. But then, as we age, we start to realize
there are things we don’t choose, and that suffering and death is a part of
every life. I can lean into suffering, I
can agree with my eventual death and the death of all those I love, but
acceptance or not, death comes.
I guess I’m
trying to say, to see, this whole deal as learning the truth about myself,
about how life really does work. The
truth is that my heart has been damaged whether I acknowledge it or not. The truth is that we are all dying, we will
all die, whether we know it or not. I
just now have a little better idea than most when I will die and what will
cause my death.
The results from Mayo?
The cardiologist was able to break my
symptoms into 3 categories: 1. a reaction to my medication, 2. neuro-cardiogenic
syncope (dizziness and fainting), 3. heart failure; the treatment of each those
three things also being the opposite of how you would treat them in
isolation. Because I am high maintenance
:). Here, I’ll break it down.
1.
I am probably not tolerating the beta blocker
well, but it really does help heart failure tremendously. Of the two medications I am taking it is the
most effective for reducing morbidity
(significant hospitalization, non-fatal heart attack, etc.) and mortality in heart failure, literally
increasing my life expectancy by more than 5 years. So, instead of reducing my beta blocker we
will try halving the dose on the ACE inhibitor, going from 5mg twice a day to
2.5mg twice a day and see if that helps my day to day side effects.
2.
Neuro-cardiogenic syncope is when your brain
over-reacts to positional changes by overly increasing or decreasing blood
pressure, causing dizziness, nausea, and fainting. Normally people develop this in adolescence
and have problems with fainting (syncope) frequently all the time. This is a new thing for me.
Which means: the doctors are not
sure what is causing my symptoms. The nerve
impulse system between my brain and heart could have been effected during chemo
when I had Taxol, which in addition to killing cancerous cells, is also known
for causing nerve damage. In fact, I
still have some dead-feeling in the tips of some of my fingers left over from
chemo. Could be one of the drugs from
chemo. If it is, it could get better on
its own or be permanent.
The dizziness, etc. could be my
brain not adapting well to my decreased heart function and isn’t changing my
blood pressure right to compensate for the decreased efficacy of my heart.
The dizziness, etc. could be a
reaction to my medication, nerve damage and heart failure all playing off each
other.
Normally heart failure is caused
by poor eating, smoking, sedentary lifestyle, etc. and is accompanied by high blood pressure. In heart failure doctors are usually doing
all this stuff to lower their patient’s blood pressure. Like telling them to not eat salt. I don’t have high blood pressure. My blood pressure is bouncing between normal
and waaaaayyyyy too low now. And most heart failure patients are told to decrease salt because they eat the “standard
American diet” which has too much salt to be healthy anyway.
To put this into perspective 1
tsp of salt is 5.7 grams (g) of salt.
Most salt measurements on processed food talk about milligrams of salt
(mg), the amount you would shake or sprinkle.
Neuro-cardiogenic syncope is treated with increasing salt intake to
10-15 grams of salt per day. Heart failure
is treated by decreasing salt to 2-3 grams per day. I cook everything from scratch. If I make soup for dinner I put 1-2
tablespoons of salt in for 20 quarts
of soup. If I make spaghetti sauce I put
in 2 teaspoons for 12 servings (2 dinners).
I need to increase my salt intake to 2-3 grams per day.
I have been drinking decaf
coffee because heart failure patients shouldn’t have too much caffeine. I didn’t know this is because caffeine makes
already high blood pressure worse.
Nothing like getting told to drink more coffee! :) Twice a day at least! I’ll add regular coffee to my second
breakfast mwahahah!
Anyway, I now have a full page
of things to try to help my body regulate my blood pressure better, and in
general, increase it.
3.
The chemo damaged my heart and set the stage for
heart failure but it didn’t pull the trigger and this is good news. My pregnancy with Matthew and the blood
volume increases and stress on the heart, that healthy hearts handle just fine,
was what likely triggered the start of my heart failure. This is good news because on medication my
heart has recovered some of its function!
My heart function isn’t up to normal for me or for the general
population but it is up. The
cardiologist gave me a 30% chance that I will recover full function.
I specifically asked, “So, if I
recover heart function to ‘normal’ does it mean I don’t have heart failure?” The answer, “Unfortunately, no.” What is does mean is that I go from New York
Heart Failure Association class 2 (symptomatic chronic heart failure) to class
1 (asymptomatic chronic heart failure).
The Mayo cardiologist said, “You
can live forever with class 1 heart failure.”
So I asked, “Forever, like forever? Or like, what?” He laughed, not unkindly, “Sorry! Forever in heart failure means up to 20
years.” We talked a lot with him about
this, really just learning the truth about my heart, about life and death and
mortality. Josh and I were worried my
heart was following the path of many former chemo patients and that I would
have a few years left at best. Instead, my
heart will probably follow the course predicted for stage 1-2 by the Seattle
Heart Failure Model developed by researchers at the U of W. Using the Seattle Model 50% of folks in my
shoes will have passed by 13-14 years, almost all by 20.
If I
can keep the heart function I now have recovered or recover back to “normal
limits” with medication then I have a great chance of living the next 5-10
years. I will probably feel fairly good for
those 5-10 years as long as I slow down a lot.
No running up flights of stairs. I need to get back into shape with shorter
distances (2-3 miles only) and I may not be able to run those miles. And we need to really look at our life. He wanted us to seriously consider hiring someone
to do the deep housekeeping (not financially possible for us now) and stop
homeschooling (He came from a family of 6 kids, so this wasn’t said with any sort
of baggage about big families being horrible) so that I can rest during the day
if I need. We will be looking at trying
to change our life style in the future to try to hold off a heart attack or
major hospitalization for as long as possible.
I will probably feel really good, that is, feel really good until I don’t.
I am grateful we
are learning the truth about my heart. I
am going to trust this news is the very best thing that could happen for our
family. I am 36 years old. There is a good chance I may die before I am
50 years old (13-14 years is the point at which 50% of stage 1-2 heart failure
folks will have died). No I am not
trying to be fatalistic, I’m just trying to acknowledge reality. We are fortunate we can plan and change some
things in our life; some folks who die at a younger age don’t have any
warning. I still may not live that long,
or I may live 20+ years, or we may experience a miracle, but either way Josh
and I are being invited by God to live like I am dying. I’m not just passing through, I’m going to
live intentionally.
As my heart dies
it will physically get bigger and bigger, and even though that is part of the
problem, I’m going to use it like a metaphor.
I’m going to get as healthy as possible and love hard and savor life and
keep embracing the truth about myself.
