Monday, January 30, 2012

Focal Nodular Hyperplasia...Surgery Part 1

Uhhh Holiday Hooty Whatty? Yup thats what I said, Focal Nodular Hyperplasia...I thought I would blog about my crazy past couple of months in the hospital and such so here it goes....

In the beginning of the summer I started having this uncomfortable feeling beneath my left ribs.  It was like if I was sitting for a long time it would start to hurt. It was weird to explain to people, but it felt like something was there that shouldn't be. Like a big air bubble or something.

I let the whole summer go by and then finally, after my hubby and mom told me I REALLY needed to go to the doc, I went.  I was skeptical about going because I was afraid they would brush it off and say, eh, its nothing.

So I went to the doc, explained my issue and she decided to do some blood work.  I got a call back a day later. NOTHING.

She then decided I should go get an xray.  So I went and did that, got a call back a day later. NOTHING.
By this time I was just ready to be done and figured, well, its probably NOTHING.

My doc then said she wanted me to get an ultrasound. So I went and did that. And I am so happy I went. And I am happy that its "procedure" to get pictures of ALL your organs, not just where you feel the pain. (Because if it was just where the pain was, we wouldn't of found anything.

So like a day later I get a call back from my doc, she tells me there is nothing wrong on the left side where I was feeling pain. However, "You have a mass on your liver, and its pretty big." We need to do an MRI to figure out what it is.  I got this phonecall at work, and afterward I didn't know what to do but cry. 

I went up into my dad's office and fell into his arms and just started balling. We instantly went online to look up liver problems.  Which then freaked me out. Bad idea.  The first thing my dad said is, you can't live without your liver. Awesome. But they can cut into it and then it feels back the space. Or ofcourse transplants. Then I thought of my nephew, Kyle, who had liver cancer when he was little. So that was running through my mind. Then the word SURGERY crossed my mind and I was FREAKED by it.

So I had to go get an MRI. Interesting experience, with the loud noises and such, and I experienced my first IV.
So it took a couple of days for my doc to get back to me and those days were killer! Finally she called me and told me that it was FNH. And that she didn't know what to do about it but refer me to a surgeon.  So they set up an appt to meet with a surgeon.  But, they decided they wanted me to get a CT scan also. So I went and did that before my appt. Weird experience. They put this fluid into your IV that makes your body goe really HOT and makes you feel like you peed your pants! Crazy!  

So the day came when I had my appt with the surgeon.  My hubby and my mom came with me. I def needed the support! So he brought me into a room and brought up my CT scan photos on the computer.  He showed me my tumor and i was speechless. It was scary seeing how BIG it was. It was the size of a baseball. I instantly got teary eyed, but tried my hardest to keep it in. 

He showed me that it was pressing on my blood vessels and making them enlarged in some spots and stretched really thin in some parts.  He said that this tumor is NOT cancerous. PHEW! Usually people don't get this type of tumor removed. However, since mine was SO big and putting that stress on my blood vessels, it could cause serious problems in the future. 

He told me the best thing to do is get surgery.  He showed me how big my incision would be (he called it a mercedes and another word I can't remember) and instantly I was thinking of worldy things and thought, "DANG! What am I gonna look like in my swimsuit now?" haha.

He said it was a 4 hour surgery. 1 week in the hospital and 1 week recovery at home. He told me the potential risk, which freaked me out. He also said that you don't usually lose blood in this type of surgery and I would maybe lose a teaspoon of blood. (Keep that in mind while reading the rest of the story)

So after we got all of our questions answered, we felt it was necessary to get the surgery.  So we went to the receptionists desk, and I thought I would have a couple weeks to process everything. NOPE, I was scheduled for October 24th 2011, that was one week from the day of my appt.

Right when we walked out the doors, I LOST it. I started balling. (I was so proud of how I kept my composure in front of the surgeon) A million things started running through my mind. And not gonna lie, I was SO scared to be put to sleep! I kept thinking, freak, I shoulda got my wisdom teeth out when i was younger so I know what its like to get anesthesia!!

That was THE longest week. And to make things worse, they called me two days before and had to reschedule my surgery to the following day. So ofcourse on that monday I kept thinking, I really should've been in surgery right now!

So tuesday the 25th rolls around and we had to get up at 4:30 AM We had to be at the hospital by 5:30 AM. UGH!! So we get there get signed in, and basically wait around for awhile.  Then they finally got me a room and I had to changed into the gown, socks, and these super tight nylon sock thingys that go up to your thighs.

Then someone came in to give me an IV. Which hurt like a mother. They put it on my forearm.  Then I just waited around again. Then the time came when I had to say bye to Johnny and my mom and they took me on my bed to the OR.

They had the anesthegiologist (sp?) come talk to me and they kept saying how excited they were?? Ha I guess they don't usually get healthy, skinny, 22 year olds to give anesthesia. They said it was gonna be so simple! Well I am glad I can make your job easier :) They asked me if I wanted to ask my surgeon anything, and I told him NO, I don't want to get more freaked out haha. 

So they roll me into the operating room, everyone is happy and smiling. They move me from the hosptial bed to the OR table and they told me I was going to need a central line (PICC line) and I told them they could do that after I fell asleep, one less thing to worry about haha.  They put a mask on me and said I would be out in about 10 seconds.  The last thing I remember was they said, "We are like vegas, what happens here stays here, now don't go telling us all your secrects while your drugged up!" All I remember saying was, I don't have very many secrets. and the BOOM.  I was out.

Next thing I know I am in a dark room...all I could think is when am I going to hear my hubby and mom's voice? After what felt like an eternity my mom and Johnny came in.

I instantly just wanted them to hold my hands. It really was so comforting.  I could barely talk and I didn't know why? The anesthesia kept me loopy for a LONG time.  The first thing I remember Johnny saying was, "They had to take your gal bladder out." I had no idea they were gonna do that. I guess in the future if I ever had problems with it, it would be hard to get back in that area.

The next thing I asked was what is all hooked to me??
-I had an oxygen mask
-I had a tube that went into my nose, down my throat and into my tummy that would extract stomach bile
-I had a catheter
-I had about 5 different IV's hooked on my arms
-I had a central line in my neck
-I had a tube coming out of my stomach that was also extracting liquids and such from my lower stomach
-I had the thing on my finger which checks your oxygen levels
-I had wires (leeds?) hooked to my chest to check my heart rate and those sort of things

The tube down my throat HURT SO BAD!! I could barely talk with it and swallowing was the worst ever!! Also my throat and mouth was so dry but I couldn't drink anything. All they could do was get a little sponge wet, and wet my mouth. 

The other annoying thing was I couldn't have pain meds yet :( My blood pressure was too low...and  I couldn't fall asleep so I just layed there in pain. I remember thinking, this is going to be the longest night ever.

During surgery the following happend:
-my surgery was supposed to last 4 hours. It ended up being 8 hours.
-when they got in there they realized the tumor was growing through my blood vessels so it was going to be much more extensive then they thought.
-They had to MOVE my ribs out of the way...ouch.
-instead of a teaspoon of blood I lost SIX pints. Your body only holds 8 pints of blood.
-I had to have 7 blood transfusions during surgery. (and 3 more during my week stay) Thank heavens I am not a jehovah's witness or I wouldn't be here.
-When they got in there they realized that the tumor was making all my organs shift around. My kidneys were squished and pushed down and my spleen was being pushed over and was enlarged, which probably was what the pain I was feelin before any of this happened.

Here is me the day after surgery


My body was so SWOLLEN.. Look at my eyelids!! ah! I could feel my cheeks puffed up on the inside of my mouth. My hands were so swollen you couldn't even see my knuckles and I couldn't make a fist AT ALL.

All the lovely things that were hooked to me.  This picture is in the ICU. I was in the ICU for about a day and a half before they moved me to my more permanent room. They didn't have a couch or anything, so Johnny brought his sleeping bag and slept on the floor. Such a nice hubby!


DAY 1 after surgery:
   Finally at about 4 in the morning I was allowed to have pain meds. BEST THING EVER.  I can now see how people get addicted. It just sent this calming sensation through my body and I felt so relaxed and out of pain. Johnny had to go to school during the day so my mom and court came to stay with me. My doctor came in to see me and I told him that the tube down my throught was very uncomfortable. So he decided it was ok to pull it out. So basically he just grabbed the tube and pulled and Oh.My.Gosh. So painful and awkard feeling. And the tube had like green goo on it. Nasty. Next my physical therapist came in. She told me I was gonna go on a walk. WHAT?!? I can barely move and you want me to go on a walk? First she told me to lift my arms..which felt like a million pounds. Then lift my legs into the sit up position. IMPOSSIBLE.. Getting out of the hospital bed was quite the process and walking was so difficult I didn't think I could do it! Then they made me sit in a chair, which I held onto for dear life, and I am sure I looked very uncomfortable.

That day I think I had one more blood transfusion. Total I had like 12 throughout my week stay. I had to have tons of other stuff pumped through my body (which is partly the reason I was so puffy for awhile) My eyes were always goopy and I constantly had to wipe them.  I had these leg compressers on that were kinda annoying. And every couple minutes I had to move my feet, point and flex. (to help me not get blood clots) The weirdest thing is when they pumped calcium into my body. It made me whole body start burning! NOT a fun feeling!!

One of the most painful things is when my doc came in and undid my binder around my abdomen to check on the incision. And when he would touch around the area, I would wimper, yes wimper in pain. Partly because, well, if anyone were to touch my tummy sick or not, I would flex my muscles cuz it tickles. Same reaction, minus the tickling part. So the flexing killed.

That night I finally had the OK to be relocated to the 10th floor. My room was 1022.  Once they got me all situated, everything went out of whack! Way annoying. Nurses were constantly coming in giving me new meds, checking my blood pressure no joke every 20 min. ZERO sleep that night.

For the rest of the week my routine was:
-attempt to sleep in
-check blood pressure and oxygen every 2 hours
-physical therapy 2 times a day
-get a finger poke probably 3 to 4 times a day to check my glucose levels
- Heparin shot TWICE daily. SO PAINFUL. They give it to you in your STOMACH!! I was so bruised
-draw blood like twice a day. Luckily I had a central line, so they could just draw the blood from that. Pain free.

To add to this loveliness..I got SUPER bad heartburn. They gave me this stupid pill at night and ya it gave me heartburn. So it took them an eternity to get me something else to help with that.

Getting my catheter out wasn't bad at all! The thing that sucked was now I would actually have to get out of bed to use the bathroom. Lame. haha. But they don't like to keep catheters in for long because you could get an infection. So since they were pumping loads of fluids through me, I had to pee ALL THE TIME. Which meant getting out of bed. Sucky.

I HATE missing things. Everyone knows this. I love planning parties & never missing things. Well, being in the hospital changed that! grrr!
-had to cancel Halloween party
-decided that instead of our cool "Hey Arnold" costumes, that I would just be a hospital patient. yayy....:(
-I missed one of my best friends husbands baptism

Saturday rolled around and they decided to take out the tube in my stomach. Not a pleasant feeling, or sight (Ashley can agree to that, she was the one holding my hand!)

On Monday (Halloween)  I was really hoping I would get to go home. All my numbers and such were looking better and they gave me the ok to go home! So ofcourse hospital time is NOT normal time..it DRAGS on. They told me at like 11:00am that I could go home that day. And at around 5:00 I was out the door.

All my flowers and cards!



Halloween! Excited to go home!



Driving home was not pleasant, every little bump KILLED. But being home was so much better. I was so glad I was able to spend Halloween at home and watch fun movies.

I had lots of good visits from friends and family. Loads of cards, presents, and flowers. It feels so good to know I have people in my life who truly care about me & love me. So thanks again to all of you!! love you all! :)