So it’s been a while since I have done a blog update. I
finally got the approval to go ahead and start the new treatment.
I have been on it for
about 3 ½ weeks now. I go to the hospital once a week to have my potassium and
magnesium levels checked. I did my EKG 3 days after starting treatment; my QT
interval is still prolonged but not any higher than it normally runs. My
potassium and magnesium levels are continuing to rise. I am at least grateful
for this, doing an IV potassium infusion is the worst! It feels like your veins
are being burned out of your body! (I
have had 4 potassium infusions)
I wouldn’t say that I have noticed a tremendous difference
of being on the medication. But I do struggle to eat way more if I forgot to
take the medicine, if that makes any sense! It still is very painful to eat and
my weight continues to drop. I try to drink more protein drinks and eat protein
bars. My pouch seems to tolerate these. The pain in my left side is quite
significant. There are some days where I can’t even take a deep breath for fear
of shooting pain. I have to take
narcotics at night in order to function the following day. I take the newly
prescribed promethazine at night and that has significantly helped reduce the waking
up nauseous feeling. I haven’t dry heaved in the mornings for a couple weeks
now!
I have also done 2 monthly injections of the vitamin B-12. I
am still exhausted and fall asleep all over the place. I feel like I could
sleep 18 hours a day and that still wouldn’t be enough. I am so exhausted by the
end of the day it is kind of pathetic.
I have a follow up with Dr. Frech in a week and Dr.
Rasmussen in July.
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