This blog is dedicated to my son Ryan McGee who passed away August 11th 2013 from complications of Chiari Malformation. In his death he gave life to others including myself by donating his organs. Please visit Ryan's facebook page to learn more about Chiari and help raise awareness.https://www.facebook.com/RyanMcgeechiariangel?ref=hl#
chiari angel
Friday, March 8, 2013
A DAY IN THE LIFE OF ME WITH CKD
I am sure most kidney patients go through all this at some stage of
their illness. I have decided to blog about it. So here goes....6
am....I awake with the familiar pain and burning sensation in my stomach
and ribcage and the sudden urge to vomit. Jumping up from my bed I
momentarily forget that my feet and legs do not work so well in the
mornings. I have at times stumbled to the floor before realizing this.
Pain and numbness shoot through me like a hot poker and I feel as though
I am walking on shards of broken glass. Holding onto the dresser then
the wall and doorknobs I slowly make my way to the bathroom. Then I
spend the next half hour gagging on the fluid that has built up in my
chest and throat overnight. I remember my doctor's suggestion of going
outside in the morning air to relieve nausea. I do this every morning
and after an hour or so of deep breathing the nausea subsides. Then it
is time to take my morning meds. 15 pills every morning and say a prayer
that I keep them down. Now time for fluid check..My feet are always
swollen and some mornings I know there are no shoes that are going to
fit these feet. This has become a MAJOR problem especially when I have a
doctor's appointment to go to. My face is usually puffy in the mornings
and my stomach looks like I am very pregnant. I tell myself that if I
ever get this kidney transplant I am going to buy myself the prettiest
shoes! Oh well beauty is not always on the outside and who cares at my
age anyway. I am just glad to be here. I try to do a little housework
but tire out very quickly. Out of breath and exhausted I get nothing
done but maybe a load of laundry. I hate the fact that I am tired and
start to get angry at this illness. I try to sit and relax but my kidney
related muscle spasms and restless leg syndrome won't even let me do
that. Time to pray for strength...I just want to be with my kids and
grandkids. Thank God I can see them everyday...they are my lifeline and
what I look forward too. Thank you God for my wonderful husband
too...always there reminding me that we are in this together and to keep
fighting..He tells me,' baby....our best days are yet to come.' As the
day wears on the fluid starts to build up even more and the pain gets
increasingly worse.I try to cook dinner and actually eat it. But by the
time it's done I am too exhausted to enjoy it and besides it tastes like
rusty nails in my mouth anyway. And that weird amonia smell in my nose
is making me sick to my stomach again. By this time of day my blood
pressure starts to creep back up. I can always feel it because the av
fistula the doctors placed in my arm starts to pound loudly and I can
feel and hear the whooshing sound in my ears as the blood pumps through
my vein. I feel as though I am being sucked into a vortex. A feeling
like the cabin pressure in an airplane at takeoff. I take the rest of my
meds. another 10 pills.As night falls my body tempature plummets, I
feel as though I have been submerged in ice water. Kidneys also regulate
body tempature among other things. I start to shake uncontrollably and
cramp. So I wrap myself in blankets, take a hot shower anything to get
warm! Finally I fall asleep for a few hours but always wake up around 2
or 3 am with the worst anxiety! I struggle to control my thoughts and
realize it is just the toxins swirling around in my brain making me feel
weird. To me this the worst of all. To feel so out of control with my
body and what is happening to it. I usually end up watching tv and
drifting back to sleep.Then 6 am I wake up with the familiar pain and a
sudden urge to vomit....
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