hi all. i had my first cidofovir infusion yesterday. i had taken probenacid 3 hrs before with food and everything seemed OK. i had no idea the border crossing at niagara was so busy and of course, they held me for questioning. the cab driver, who was charging me fair +tolls + $32 to go over the border, said i would have to pay anyway and he left (i had read that the broder was a short walk from where the bus dropped me off but this wasn't the case). one woman in the waiting room at the border office said she had been there over 2 hours, so i was pancking, knowing the infusion nurse was waiting for me and i had already taken the probenacid. after 20 min wait, i asked one of the officers for help and he let me across the border.
the infusion went smoothly. we did 1 L of saline, 1 L of Vistide, and 1 L of saline (most CFS docs seem to be doing 2 L of saline after instead of one but my doc wanted me to do one, saying I can drink a lot of fluids after if i want).
During the infusion, I felt sleepy but didnt sleep because I felt like I should make conversation with nurse. she seemed confused that i was taking vistide without having CMV so i told her the whole story. everyone told me i would be running to the bathrom a lot cuz of the saline but i only went maybe 3 times.
my cell phone was new and i didnt know how to set the alarm so i fell asleep after the nurse left. consequently, i was 1 hour late for my 2nd probenacid dose. i took it quickly without food, along with some other meds, and fell back asleep. i woke up 1 hour later and soon after, began vomiting. i felt feverish and horrible.
i remembered that vistide can kill people and no one i had spoken to told me they vomited, so i panicked and took a cab to a nearby local hospital, where i was informed that i would have to pay $800 or so to see the doc and get the liver and kidney tests (i was now in the US part of niagara falls). i decided then to take a cab to the toronto hospital where my doctor works. on the way, i threw up violently again and decided to go to a hospital on the canadian side of niagara. then, i changed my mind again and told the cab driver to just take me to the toronto hospital. i threw up again.
for the last several years of my CFS, i notice i have lack of bladder control..so whenever i threw up, my bladder would empty itself, despite the fact that i had just gone to the bathroom. the poor cab driver had to stop repeatedly for plastic bags for vomit and to let me change.
finally we got to toronto and i infomed the cabbie that there was a whole bunch of urine soaked into his back seat. he seemed upset and said he had just gotten the SUV and would have to sacrifice an entire day of work while he got it professionally cleaned. he asked for $50 extra and i gave him $60. he was very kind and after all that, still gave me his card.
at the toronto ER (this is known as the best ER in toronto and is always packed full), i saw that miraculously, there were no other patients waiting. incredible. i had no fever and normal blood pressure. they gave me bloodwork and urinalysis, which was normal except for low phosphorus. since they were not busy, they let me rest and i fell asleep for 90 min. i was 4 hrs late for the last dose of probenacid. as expected, the attending physician said i was "making myself worse" by trying experimental treatments for CFS". i didnt care to argue.
i had to take another cab home and fell asleep. so i wasted about $350 on top of the already ridiculoulsly high price of this treatment.
the bed and breakfast owners, where i had the infusion done, were very kind and called today to make sure i was OK.
i emailed my doc, who said different people's gastrointenstinal systems respond differently so i shouldn't worry.
i slept most of the day today and feel maybe a little worse in my head and neck, and my right lymph node aches... but thats about it. i go back next wednesday.
the bed and breakfast was so pleasant and i had planned on taking advantage of the wonderul breakfast and leisurely walk around the falls but it was not to be!
thanks for reading
sue
thanks! yes...i started azt again but took only 1/2 dose on the day of the infusion. i am sure i threw up most of my meds anyway.