Room For All

Welcome to Wondercafe2!

A community where we discuss, share, and have some fun together. Join today and become a part of it!

Register Log in
Got a call this morning, med was approved for me to use it. Went early to just do it all there so it was within a short timeframe before.
Everyone was nice but the experience was really not good.
The first IV line that was being started - ugh. My arm is still throbbing and I have a very tender lump. Large needle & with digging. I mentioned a few times vasovagal reaction, getting lightheaded, etc. she was still digging though while I did my best to get my blood pressure up. She thought she had the line and tried to push some saline - no. I was quite close to passing out, felt like no one was really watching for that (Chemguy was in the waiting room, it was just me and the student in the room at the time) and I ended up throwing up too.

A nurse ended up starting the line for me - nice and gentle but it was in my inner elbow, so not a nice spot for moving around. The line then ended up being taped near the sore spot. With the placement of the thing over the area (I forget the name, I should know it) with every breath the IV line moved, causing the spot to hurt more. I also had to do a fair bit of inhaling, exhaling breath holding while in the MRI. A bit surprised how long I was expected to hold my breath at times too, not sure I always managed it totally but hopefully good enough, my abdomen at least seemed fair still on the holds, I think some really shallow chest breathing occurred while 'holding' at times.

I also did not realize they push the contrast while you are in the machine, some of the images are collected prior to any pushing. I was expecting any contrast to be done prior, like my PET-CT. They had a good section explaining potential side effects and noting what it was, but no info about when they push it. Explanation of that only came when I was getting on the board to slide in. I was a bit concerned that the IV was lost due to the pain in my arm, but it was obvious at least when the pushing started it was a good line. Monitoring for side effects (both allergic & HAE) while in a scanner isn't what I would say is ideal, but no problems that way.
 
Oh and the hospital itself - the very opposite of cheery. I don't think I have been to that particular one before. The entire time it felt like I was in an area that the general public just shouldn't be, but that was the hallways in general. I have had a bit of that sense before at another hospital, but it's only some of the hallways and most of which a visitor/support person wouldn't be in if they were just sticking to the waiting rooms. With this hospital the entire thing felt like that. And the 'lobby' - right walking in the doors and where patient admitting is - was surprisingly crowded.

My biopsy would have been done there if my hematologist didn't get involved. I'm much happier it's going to be done at the university hospital, especially now seeing this one. With so many patients sitting in the lobby, on stretchers in the hallways, crowding them it seems like a great place for a nosocomial infection. So more relief now, for a very different reason.
 
Wow @ChemGal that's awful. When I had my MRI they told me they would start with some non-contast images then would put in the dye and do some more. They told me when they were putting it in. They also checked in now and again to make sure I was okay. Your experience seems pretty bad, especially with a test that can be difficult for many people. Are they trying to make it even more difficult??? I hope you're at home now with your feet up.
 
Northwind said:
Wow @ChemGal that's awful. When I had my MRI they told me they would start with some non-contast images then would put in the dye and do some more. They told me when they were putting it in. They also checked in now and again to make sure I was okay. Your experience seems pretty bad, especially with a test that can be difficult for many people. Are they trying to make it even more difficult??? I hope you're at home now with your feet up.
Click to expand...
The people were nice and stuff did get explained more when I was going into the machine, and they did check that I was doing ok while they were injecting the contrast. I did wonder if the nurse had just injected it fast when she had done the IV - I knew she had pushed some saline and at that point I was laying on a stretcher as they did want to make sure I didn't faint completely the 2nd time.
I came home, ate, iced my arm and watched a Christmas movie on netflix and fell asleep halfway through.

As far as testing goes it's not up there for horrible experiences. Just a really bad failed IV experience which made all of the MRI rather unpleasant.
 
Ugh, so cancer is not ruled out. Primary liver cancer is apparently still a contender although my doctor brought up doing a tumour marker test - which was already done and is negative. (Again 'on it' he had trouble getting the results, I have them on my phone and knew the numbers even if I had trouble accessing).
So basically no answers until the biopsy happens. I am pushing the cancer possibility to being very low for myself for now. He just doesn't really have other ideas. My symptoms don't match cancer and other than these masses test results don't match cancer.
I hope I get a biopsy date ASAP.
 
Last edited:
What a dreadful experience Chemgal. You would think that 'doing an IV' would be so routine that the staff would do it quickly and easily. I guess not. Hope you get over the pain of this quickly and start to get a diagnosis and treatment plan. Gentle hugs.
 
Northwind said:
Oh man @ChemGal. I found the not knowing the worst. Pushing the possibility of cancer to low right now is a good strategy. Just deal with what you know. One day at a time.
Click to expand...
My hematologist is also the smartest of the bunch. He's halfway around the world now (or maybe currently on the flight there) so no info from him with the MRI results, but it's not like he could do any confirmation anyway.
I did call my nurse, got her in the loop and also confirmed the department that will do the biopsy so I can call them myself too. I'm going to wait 48 hr after the MRI results were posted to hear about scheduling before I start inquiring. The MRI shouldn't have even been necessary for the scheduling, but I also realize that sometimes they like to have as much info as possible before setting appointments.
 
I think in some situations more information is better. I know I needed the MRI for scheduling. I imagine you're in that boat too. You're a few steps closer now.
 
Northwind said:
I think in some situations more information is better. I know I needed the MRI for scheduling. I imagine you're in that boat too. You're a few steps closer now.
Click to expand...
My hematologist was surprised on Monday when he called me that it wasn't already scheduled.
 
ChemGal said:
My hematologist was surprised on Monday when he called me that it wasn't already scheduled.
Click to expand...

Maybe he'll be doing something to facilitate it happening sooner. Perhaps the MRI will provide info to trigger scheduling too. Good luck.
 
Northwind said:
Maybe he'll be doing something to facilitate it happening sooner. Perhaps the MRI will provide info to trigger scheduling too. Good luck.
Click to expand...
With him travelling internationally right now, I doubt it.
He spoke to someone in the department directly already, I thought that would facilitate the appointment being scheduled quickly. He seemed to think so too.
 
I figured he might have spoken to someone before he left. Did he give you a name to contact in his absence, or is that the nurse?
 
Glad to hear the MRI experience is behind you now ChemGal. Sounds like a difficult day, and you managed it well. One more step along the way. Also glad you squeezed in a snooze this afternoon - sleep is a good healer.
 
I've been 'downtown' for the past two days - at workshops learning about EDGE programmes & processes. It was great to meet others embarking on doing some consulting, and others who have been at it for a while. There's lots of good stuff in development and I am new to this, so have to remind myself to have patience. Another person commented - "it's a bit like drinking from a firehose" - ie so much info flying by us at great speed & trying to take in what we could! So I will put my feet up tonight - do some knitting :)

I journeyed to the meetings at the national UCCan offices by taking two buses each way - which was intentional on my part, partly because traffic & parking are horrible, and partly because I wanted to experience taking the bus which I haven't done for a long time. It was interesting to me just be present on the journey, taking in all that was going on around me - both on the bus and in the wider neighbourhoods. It was interesting.
 
Glad your MRIs are done chemgal. You mentioned a student inserting an IV I think. As a patient you can refuse to have a student do a procedure. Given that you are special-with a rare condition-and bad side effects if things aren't done well you might want to consider that.
I had a hospital social worker remind me of the right to refuse when my daughter was in U of AH.
 
You must log in or register to reply here.
Back
Top