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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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I did it!
Hi everyone -
Well, from the title of this - you can tell - I did it - I had my first Ty infusion today!
I was at the cancer center by 8:30am for my consult with the oncologist. He came in, talked to me for about 3-4 minutes. Said he's seen great results in my doc's patients (my doc and the rest of his practice send over 40 people to this site alone - being that it is right across the street from their offices!)....and that he's only seen one person "fail". This was good news. He just told me to relax....
I asked if I could take my usual morning meds - and he said yes. Then I asked if I could take my ativan for anxiety - as I don't do so well with the I/V insertion - and he laughed and said sure. I asked about benadryl - told him I had brought 3 types of benadryl with me. He chuckled again. He said they could put it in my i/v if I wanted. Then he had the nurse walk me to the infusion room.
I was first one there - being that it was only 9am at this point. My best friend was there with me. The nurse told me that she could put the benadryl in - but that it was as higher dose than you would usually get from the OTC stuff - and that it makes people sleepy. I chose to just use my liquid benadryl (bubble gum flavor). I showed the nurse the place where I've had the best luck in receiving I/Vs - as I've had 2 week-long tx of steroids - and that usually the nurses blow the veins quickly - but that last time, I made it the entire week using my hand - so she did just that. I was so pleased that she was willing to listen to me.
The room was absolutely FREEZING. I finally asked for a blanket. My friend gave me her sweatshirt which she put on top of blanket....and then eventually I got another blanket. I had a pillow behind me, the chair reclined. Very relaxing actually.
I fell asleep shortly after the infusion started (gotta love ativan for that!). I woke up after it finished. Waited a lil while longer....and then was released to go home.
As I was leaving, another woman was coming in for her 12th or 13th infusion. She told me that the Ty has not been helping her - she was wheelchair-bound and appeared to be completely disabled (had to be transferred from chair to chair using a board, etc.). I was a little too out of it to keep talking with her - and the room was getting full anyhow...so then I left.
I was home by 11:15am this morning....pretty amazing since I first got to the doc's office by 8:30am. Less than 3 hrs from door to door. (Of course, the office is literally 5 minutes from my house!)
I was also able to schedule my future Ty's for a Friday! Yippy.
My only concern is..... now don't laugh....
and this is NOT an April Fool's joke...
I feel totally fine. I mean - I feel no different - not better nor worse.
I am a little achey - though I don't know if I can attribute that to the infusion or not sleeping last 2 nights, etc.
I'm actually a little nervous - and keep joking that I don't know if the meds were actually in the I/V because I think I wasn't paying attn to the nurse when she put it in - meaning, I didn't see her put it in? She did give me the box from the meds (I asked for the lot# info, etc.). But really, I felt nothing as the meds were being infused. Is this normal?
So, now I guess I sit back and wait.......hope the "magic" happens. I guess it's also time to move into the land of the living - don't need to spend my day crying on the phone trying to get this to happen, etc. Now I can try to live - and learn to live with MS. Oh, I do need/want to schedule my next MRI for next week if I can...but other than that....
I start a program at UCLA on Monday evening. It's thru the NMSS - it's called Living Well - it's for newly dx people - and it looks phenomenal...it's 12 weeks long - and I hope to get a lot out of it.
Hope everyone is well,
~Keri
ps/it feels REALLY good to report that things went as they were supposed to for once.
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