Wednesday, March 27, 2019

I'm Radioactive!

This was a day I hope to never repeat!!

He totally suggested
taking the action shot!
The alarm went off at 5am. We were leaving St Helens before 6am. By 6:45 I was getting dropped off at OHSU and at my first appointment before the doors even opened. I really had no idea what this day was going to be like but I was determined to stay positive. Ideally this day will be a huge step in helping me get my CSF leak fixed. If you read the first blog of all of this stuff, I went with option 2 - testing to find where the leak is so they know where to go in and fix it.

First up was a quick visit with ENT. I watched the doctor arrive for work and soon we were talking Hood to Coast (because why not?!?) while we waited for my nose to become numb. And then the horror of my next 26 hours began. He had EIGHT pledgets labeled and ready to go in my ears and nose. 8 things for 4 holes?? Umm.... what?!? Three went in each nostril. It wasn’t super awful getting them up there, but it wasn’t pleasant. Next was my left ear. It hurt but then was resting fine. My right ear, however, nearly brought me to tears. He was awesome and took it out and said to blame him if the other doctors complained. I couldn’t even breathe or swallow without intense pain when it was briefly in my ear. No way!! All the strings were taped to the side of my face and I was sent on my way. I had to be seen all over OHSU looking like this?? 

Off I went to the main OHSU hospital and was quickly admitted and sent to my first room. Happily all I had to do was put on the open back gown, but was allowed to keep my pants and sports bra on. I never had a chance to even turn on my tv and I was being wheeled off to the next appointment. 

Don't you love my gown?
Where I got to lay on my tummy and get
stabbed in the back while having an x-ray
Ugh, I’m still feeling this one. I was with radiology and the awesome guy that was going to do my lumbar puncture. I feel bad, I can’t remember everyone’s names. I met so many people and they were all really great. This guy was extra great. He explained in detail all that was going to happen and answered all of my questions. 

I crawled out of my bed and got onto the table under the X-ray machine. And in went the needle. I handled it well and then a jolt shot down to my foot. We were near a nerve. I felt another zap and then another painful jab. That was the spot. Then we waited. A long time. While we waited there were a lot of conversations happening. Finally one man introduced himself as Dr.___??? and said that cisternograms are always unique, but mine was an extra special set of circumstances. He didn't elaborate and since I had a huge needle lodged in my body I didn't have the energy to ask.

Radiology had to call nuclear medicine. Someone from nuclear medicine personally walked over the radioactive fluid that would be going in my body. He then took over and injected me. I didn’t really feel it at all. Then he took the tubing and all things that came into contact with the fluid and put it back in the sealed metal box. Before he took it away I asked to see the needle. Oh my gosh it was BIG!! They were shocked I wanted to see it and then in disbelief when I asked how much was in my body. I’d say the needle was 4” long and over 3.5” was in my spine!! No wonder I’m still feeling it!

I rolled back onto my original bed and was transported to my recovery room. My headphones came out and I disappeared into the world of podcasts to kill time. The lady on the other side of my curtain was bitching about everything so I was happy when I was being wheeled away again. 

Officially radioactive!
That flat panel ends up
maybe 1" from your face
This time we went to a different building and down to the basement for a cisternogram with Nuclear Medicine. This became my home away from home. I had a scan that was probably 25+ minutes long. If you’re claustrophobic or overweight I don’t know how you’d do it. This machine slowly sucks you in and then lowers down over you. I am pretty sure Gene Simmons could stick his tongue out and easily touch it. That’s how close this is to your body! The goal of this scan was to see the radioactive fluid flowing through my body hoping to find the leak. 

Once again I was wheeled back to my recovery room. It wasn’t long and I was discharged! Yay— or so you’d think. This just mean now I had 3 hours to kill at OHSU with a sore back and stuff shoved up my nose. 

It just doesn't get any sexier than this...
I found a couch in the sun in a low traffic area and I claimed it as mine. I watched Mary Poppins returns and continually shoved tissue on my face to catch the nonstop dripping coming from my nose. How could I have any CSF fluid left??

My recovery "room"

Unexpectedly I heard a little girl voice that I know very well. Katura was running toward me!! Then she saw my face. I was scary. She kept a distance from me, not sure what was going on. I get it. But it was sad. We wandered around a while together taking in the sights before I parted ways and went back to Nuclear Medicine. I was so excited!! Last test of the day and the pledgets would be removed. Hallelujah!!

I eagerly checked in, with Shawn and Katura arriving only moments later. I hardly sat down and was taken back by this really great guy that I of course can’t remember the name of. He took blood and then took me back to repeat the test I did earlier. I was a pro at this. You just lay super super still and not worry that you’re nearly having a full body mammogram!

He went back to show the main nuclear medicine doctor the scans. He returned with good news and bad. The good: the fluid is flowing toward my head the way they want. The bad: they want it to get up there a little more so I would need to come back the next day. The really bad: the pledgets had to stay in my face!! I was willing to do it because I want a resolution, but I really wanted to cry. He got me all taped up even more to make sure everything would stay secure. I even got to take medical tape home just in case I needed more. 

Ready to have a breakdown
before I even heard the bad news.
My nose is so poofy!!
Back to St. Helens we went. I hadn’t planned for this. So a stop at Walmart was made for emergency clothes for us girls. I couldn’t bring myself to be seen in public so I trusted them to find me something cute. They did a good job and now I own 2 yellow shirts. And I finally got food - a flatbread sandwich from Subway. If only I could have actually tasted it. 

I was absolutely miserable all night. My nose was dripping so much. A fast gush coming out going down my face if I wasn’t quick enough with the tissue. I didn’t sleep at all. I was on the couch alone being a mouth breather. I woke up choking on the driest tongue in the world. I had to get water and probably every 30 minutes take a drink. It was torture. 

At 6am I was up and taking a bath since I couldn’t get my head wet. We were out the door and on our way, getting me to OHSU 30 minutes early. As I hoped, Nuclear Med took me early, with my same guy coming to get me for my last cisternogram. He said he was nearly 100% certain Dr. Nance would remove my pledgets today. I just hoped it would be soon and not hours later. 

My scan went the same as the others and quickly thereafter the head doctor was with me. He explained that this next step was the most important. They would remove the pledgets in a certain order to avoid any cross contamination. These pledgets will be the key to this whole process. They caused misery but hopefully will show what they need to see. 

Freedom!! I can breathe! I can smell things!
I can go shower!
And so three men worked together to peel tape from my face, untangle strings, remove and store the pledgets. Oh man was it uncomfortable. It brought tears to my eyes but also great relief! I could breathe!!! I could smell!! Things we take for granted suddenly felt like the greatest gift!

Where do things stand now? Dr. Nance will asses my scans and pledgets and get his findings to my ENT doctor today. My doctor said he wanted to talk to me himself on Friday. So hopefully I hear from him. If not I will give him a call myself to see what he says. And from there? I don’t know. One surgery? Two? I don’t know. I’ll keep you posted!

Sorry this was long - but experiencing it was even longer. The schedule I was given looked like I’d be done at 12:15 Tuesday afternoon. Instead it was 9:35 Wednesday morning! And Tuesday I was at the hospital until about 4pm. I’m worn out! I’m ready for bed.


2 comments:

  1. Is this post sponsored by Phillips? ;) PS - you're welcome to raid my closet in the future if you need emergency clothes. We probably have at least one of the same race shirts.

    ReplyDelete
  2. You sound very positive. Hang in there. You have lots of people supporting you❤️

    ReplyDelete

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