Monday, October 1, 2012

Having a Total Thyroidectomy, my experience thus far

Day of having my Thyroid removed:
We arrived at the hospital where the Dr himself greeted us, said it wouldn't be long before we go back to prep. In prep they did everything usual, had me put on socks and "the gown" everyone loves to hate, got all my stats, and had me fill out surgery paperwork, then they had to put in an IV. Well, apparently all the water I drank the day before did the opposite for me and made me REALLY swollen. It took 5 tries to get an IV going and even at that it was in the bend of my arm where they usually take blood...not their favorite spot but it was the only one that worked. I also used the bathroom twice in the time I was there because I was so nervous my bladder felt full constantly. The nurse said she'd give me something to start relaxing me and as she was doing that I looked over at my husband and said (not one minute later) "ohhh I can already feel it". He apparently (because I have no memory after that) kissed me on the forehead and said bye and I said "bye husbands", and the nurse replied "husbands"??, to which he questioned "am I the one in the middle"? and I said "yeah" as they were rolling me down the hall. I do remember one more thing, the med Dr (I never can spell it), putting a mask on and saying "just giving you a bit of oxygen, breath"....and BOOM I wake up in recovery (they always lie about the oxygen).

In recovery:
I felt her patting me on the head/or neck I don't remember..she might have been cleaning me off from the iodine and junk they put all over my chest/neck/and half my face and telling me I'd be in a room soon when I asked for one of the husbands. ;) Recovery went quickly with me in and out.

In the room:
THE husband was there, and I said "hi" and still went in and out..but about 30 minutes after I arrived I had to pee (of course). So I asked the nurse if I could get up and she said if I thought I could. Two tried to help me but I easily got up and went to the restroom after they unhooked me from the IV box, and took the leg thingys off me. They put them back on and said I needed to get up three times before I could keep them off...but then they forgot to turn them on so it didn't do much good.
I was able to eat in about 2 hours right at supper time. Opening my mouth (I have TMJ so the thing down my throat locked up my jaw during surgery) was difficult and so was swallowing, and I couldn't talk above a whisper. But otherwise it wasn't so bad. I sent husband home and went for a walk down the hallway, knowing I'd feel better the sooner I got moving.
HOWEVER. At midnight the nurse came in to give me my Toradol, and the IV had broken so she could not. Rather than giving me a pill she just said she'd wait to see if I needed it and she'd try the IV somewhere else.
About 3am I awoke in EXTREME pain. My whole neck, shoulders, back, inner thighs, every muscle screamed in pain. I called the nurse and asked for that IV. Three nurses tried and couldn't get a vein. I had now been stuck 8 times. So, again rather than getting a pill they said I'd have to wait for the DR to come in the morning and see what he wants to do. *Ammendment* i wracked my brain tryin to remember every detail and i think they did give me hydrocodone at about 5am. But by this time it wasnt enough. I endured this pain until 730 am just crying, and trying to concentrate on something else hoping for sleep.I had had no toradol and only hydro for 10 hours at this point.

Second day:
Dr came in and wasn't too pleased with how unhappy I was. He thought it was just an emotional reaction. Of course, the nurses didn't tell him I hadn't had pain meds since 9pm the previous night. He stayed on track with sending me home and I admit, I was scared. However, he did give me the toradol and hydrocodene in pill form. Still every muscle was tense and hurting, I hardly slept even after getting a pill that day. My husband coming in helped me relax a little bit, but I was not very pleasant as I'd had a horrible night.
We went home that evening and I tried to relax. The nurse called before 5pm and I told her I was still in alot of pain and was afraid I would not sleep which would make it worse. They called in two sleep meds I could take.
She did also tell me that the lab results came back on my thyroid, it was larger than expected (we expected fairly large), and had extreme thyroiditis but no cancer (the nodules had grown 1 cm in the past 6 months so it was a small possibility). It was very diseased and attacked by my diseases though. I have had Hashimotos longer than we knew apparently.

Every day since I've been battling the pain/swelling/and muscle pain to boot but most days it get's just a little bit better. Today the muscle pain is better but I have some swelling in my neck making it hard to swallow and breath. I have sent the Dr some pics and I'm sure I'll hear back from him soon on what to do about this swelling, if anything. It get's worse at night and when I lie down it feels like there are hands around my throat making it hard to breath and swallow. It honestly freaks me out.

It's just really one of those things. It's not as bad as you think it's going to be but worse in other areas. I keep having to remind myself that I am only 7 days out of surgery and that it WILL feel better soon.
I don't know if the muscles pain is a result of low calcium, or a reaction to some meds I had to knock me out or both but that part I could've done without.

The good news: I am on 125 mg Synthroid to replace my thyroid hormone and I feel pretty good attitude wise. I've experienced no depression thus far and my mind is more clear than it has been in a while, which is weird considering the heavy meds I'm on making it less clear than normal.
We have some amazing friends and family whom have come to take care of the boys and bring us supper and they will never know the blessing they have been for me. I'm actually a lil scared to do it on my own today.

I won't be starting homeschool today, but I will be lesson planning. I'm trying to take it easy as the swelling has me a bit concerned and I do not want it worse for sure.  I might cancel Charlie's visual therapy for today, I need to make sure I can do an hour and a half outside the home first. Maybe wed?

*UPDATE* 5 months out
That swelling that was scary only lasted about a week, and I found out why. My incision is larger than most because my Thyroid was SO big and diseased that they had to make it bigger, PLUS they had a really hard time taking it out...it had to come out in 3 pieces as they couldn't get it out at once and save my voice. In fact, my Surgeon was surprised that I even HAD a voice in my last appointment. He was expecting me to have vocal problems for the rest of my life due to how they manipulated the vocal cords to get that stinker out. :( This was scary to find out I tell you.
But, actually, it's easier to talk and sing now. I didn't realize how much I was having to force singing in church until a few months out. I praise God I didn't lose my voice. :)

Also, because I remained Hypo for several months after surgery I have gained 30 lbs. :( BIG FROWN THERE.

So. 5 Months out. I am on 125 mg Synthroid, 20 mg Cytomel and I'm doing REALLY well. My next Dr appt is in 2 weeks and I'm SO ready to talk to her and see where my labs are. I don't think I'm there yet, I still feel tired and drained most days so I'll ask for a little bit more med adjustment, maybe even go Naturethyroid instead of synthroid. We shall see.
It's hard to believe I'm only 5 mos out of major complicated surgery. I'm harder on myself than I should be and think I should be better than I am. But, when I force myself to remember that fact it makes me go "oh yeah, I really AM doing great"!

And I am. For the first time in 8 years I actually FEEL good again, besides the little bit of tired I still have. I actually FEEL like myself. I am gaining more confidence and muscle.

For the first time in 2 years I am actually starting to believe that it's going to be ok. That this is not my time and I have much more of a life to live, Lord willing.
Now THAT folks, makes that major and complicated surgery ALLLLLL worth it. :)

4 comments:

  1. Being a nurse, I am seriously trying to process what you have written here. It is against every policy to leave a patient without an IV if it is ordered. If your nurse could not restart it, she should have called an IV team. If you were tolerating food, why would they not give you your pain medicine by mouth in the first place? Toradol is IV ibuprofen, which is usually a standing order medicaiton, unless you have a stomach issue. All Doctors are on call, so why on earth did they not call the Dr. in the night and ask for pain relief? The final thing I am shaking my head at is, charting is on the computer, so any reputable Dr. should have looked at your chart and seen exactly what and when you were last given medication, so he should have known that you were not medicated. So here is the thing I tell all of my patients when they are admitted: "Please be involved in your care. Please tell me if there is any way that I can make you more comfortable. Do not be afraid to ask me for things or question what I am doing. I want to give you the best care I can, so don't feel like you will offend me by telling me if you need something." No one needs to be uncared for or in pain. I am so sorry this happened, it makes me afraid to ask where you had this surgery at. Hugs to you.

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  2. Hi April!
    I had to think really hard about the meds and ammended my statement because I remembered they did give me hydro codone after they gave up trying the IV at about 5am. At this point though, it wasn't enough.
    Honestly I think it was one nurse making one mistake and I think she did so because they were TOO busy for the staff. I remember them saying they had like 18 post op patients that day. This being a small privately owned surgical hospital I just think the Dr's overdid it on their staff. Otherwise this place was most excellent in every way, just happened to not make a good decision for me.
    I did keep asking her for Toradol in pill form and she told me he didn't prescribe it, only in IV form so she'd have to wait for his order. She should have called him at 4am when they'd all tried for an IV in me. But I'm sure you know as well as I do that nurses do not like disturbing Drs if they can help it.
    I'm sure he saw it on the computer but then saw I was given Codone and thought it was acceptable and therefore shouldn't have been crying when he came in.
    It sounds like you're an excellent nurse, your patients are lucky to have you care for them!
    Overall I wouldn't say my experience was horrible, just...bumpy. But then again, bumpy is my life. ;) :P

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    1. I just hate to hear stories like that. Being a nurse, I hate when I get to work and we are understaffed, as patients suffer as well as the nurses. The Toradol issue is crazy, especially since it's just ibuprofen (but it works great). I have a totally different attitude about calling doctors in the middle of the night. Nurses are supposed to be patient advocates, that means I stay up all night making sure you are okay. If you are not okay with what the doctor ordered, I call the doctor. I do not care if a doctor gets upset or not. My view is, if you don't want to get called in the night, then don't be a doctor. Frustrating, to say the least. I'm sorry you had a bumpy road and I hope it gets better for you. :)

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  3. Very true April. When the hospital called just now to get my report on my care I let them know what happened. Hopefully it will be addressed so noone else has to be in pain like that again. ;)

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