Monday, June 20, 2005

Back At Home- Post Surgery

I started feeling lousy on the way home from the hospital Monday (June 6th) but chalked it up to a long few days and having to travel home. Once we got here though things got even worse. The nausea and headache started on Monday, by Wednesday I couldn't eat, sleep, or function, and by Friday I knew I was dehydrated and heading towards a poor state. By the time Vin got home from work on Friday I knew I needed to go to the emergency room. So the kids stayed with a friend while he ran me up there and saw me through triage.

This is where my bad luck comes into play yet AGAIN! After triage I was put in the waiting room for TWO HOURS. Finally I was called back, put into a room, told they were going to start an IV and give me some Zofran for the nausea. They then proceeded to pretend I didn't exist for over 45 minutes. It seems it was close to shift change so they decided I could wait that extra time so they wouldn't have to do anything.

Finally the new shift came in, started the IV, told me they were getting the Zofran, and told me they were drawing blood. Another 45 minutes later I asked if they planned on drawing blood and was told they were still waiting for the order of what to draw. I finally get the stupid Zofran which does nothing for my nausea.

Now as soon as I got there I told them everything I have wrong with me, had all my meds with me, had my medicalert bracelet on, and even gave them the number to call Dr BC. I guess they actually DID call him and he told them what tests to run as well as to up my steroid dosage.

Back to the ER- another half hour goes by and they finally come to draw my blood. At this point it is 8:30 and I am completely ignored for the next hour. At 9:30pm a nurse comes in and asks how I'm feeling to which I tell her that I feel worse than when I came in. Then I'm ignored for another hour when another nurse comes in and I tell HER that I am still nauseous. At 10:45pm they give me another shot of Zofran and tell me the doctor will be in soon to talk to me.

Finally at 11:10pm I see the doctor (Dr. Quinones- the same MORON who saw me back in December when I had the kidney blockage) and he informs me that "my tests" came back, everything looks "fine", and I am free to go home. I asked him if everything was fine then why did I feel WORSE than when I got there. He tells me to follow up with my regular doctor, asks me why I don't have one, I explain that it's hard to find one who knows what MEN2a is, and this stupid arsehole proceeds to tell me "Well some of us seem to know what it is right?". ARE YOU KIDDING ME??? This man is a complete moron! TOTAL moron!

So I call Vin to come get me, tell him in the parking lot that I am just stinking fine, and we go home. I then find out that Dr BC told them to up my steriods but they NEVER mentioned that to me ONCE!! So Vin and I decide to double my steroids ourselves and see if that helps. By Saturday afternoon I was feeling much better and by Sunday I was feeling more like myself.

Now mind you for the entire week I hadn't had any pain medication because I thought it was what was making me sick. So I've been in pain nonstop. :(

The following Friday (June 17th), Dr L calls me and says that I was in adrenal crisis and that had Vin and I not had the common sense to up my steroids I would have ended up in a coma and might not have come out. This was lovely news to hear. I made it through cancer and surgeries just to almost clock out because of not enough steroids. UNREAL! The next Monday I filed a report with the hospital which basically means I complained so that they can ignore me and not do anything about it. Dr L told me to never go back to that ER again though and to go to the other hospital from now on. That advice I will definately be taking. That would be at South Georgia Medical Center by the way.

So once we doubled up the steroids for a few days I started feeling better. We also found out that they didn't bother to do a calcitonin test so we still don't know how much I've dropped since the surgery. My thyroid levels supposedly came back fine and so did my calcium at 8.5.

I have to get bloodwork done here in a few days and we will do the calcitonin and anything else we need to then. Hopefully everything is where it's suppose to be and I'm really looking forward to seeing how much the calcitonin has changed.

Sunday, June 12, 2005

Jo's Second Surgery- Thyroidectomy w/Lymph Node Dissection and Parathyroid Reimplantation.

Say that one five times fast! ;)

I'm going to keep the pre-surgery part short so I don't take up too much room. We went down to Tampa on Tuesday night, I had my appointment with Dr. P (the head and neck surgeon) and he told me they would be cutting me more than I thought, I saw Dr. BC's nurse practioner, Heather, and found out she was almost 9 months pregnant (she's so tiny the rotten thing!), had my pre-op appointment, and then spent the day with the family doing things.

The next morning (June 2nd) we arrived at the hospital around 9:30am and got checked in. After that we spent about an hour in the waiting room during which Vin and I agreed that the best thing to do was for him and the children to head home as soon as I went back to get ready for surgery. He wanted to be there during and when I came out of surgery but I just couldn't see him and the children waiting around all day plus having to drive back home that night. The best thing for all of them was to go home where they would be comfortable. So once I was called back Vin went back with me, told me he loved me, and then left.

I spent another 2 hours sitting back there reading magazines and watching doctors and nurses walk back and forth. Dr BC came to talk to me at one point, Dr P didn't, a few nurses prepped me, one gave me some Vercet (and I warned her I would be out before I hit the OR), and off we went. The only scary part was when Dr BC informed me that I could come out of the surgery with a trachiotomy or unable to shrug my shoulders.

I woke up in my room around 8:30pm and the first thing I did was feel my neck to make sure there was no trach. LOL. Having done that I felt my incision and realized that it was MUCH larger than they had said it would be. It was in a U-shape and started under one jaw, went down my neck, across my collarbone, and up the other side to my other jaw. :( I also had two huge drain tubes in my neck that were hurting pretty badly. The next thing I did was test my voice and found much to my delight that I had a voice! YAY! Directly after that I called Vin to let him know I was okay and found out that Aidan started getting a fever on the way home so we had definately made the right decision earlier.

The first night was really rough because I had a HORRIBLE male nurse named Jim who it took SIX HOURS to realize what I meant when I said the pain medication was making me sick. I tried to explain to him that this wasn't my first surgery and I also knew that I wasn't suppose to be in any pain much less have the room spinning, be throwing up, and feel nauseated nonstop!! Finally around 4am he switched me to another pain med and I started feeling better. After that I tried to get some sleep but of course couldn't because the door was left open and no one would answer my call button.

At this point I will just say that I am NOT getting anymore surgeries done at H. Lee Moffitt Cancer Center. I was very disappointed with the nursing staff while I was there. It was horrible! At one point I was choking on a pill (granted not DYING but the thing was stuck) for over 10 minutes and had pushed the call button three times to no avail. Finally my nurse just happened to come into the room and got me a drink to try to wash the monster pill down.

Response time to the call button was awful, nurses wouldn't listen when I said I needed certain meds (even after being told twice they thought my steroids were for inflammation and were nonchalant about giving them to me. I was constantly telling them that I NEEDED the dang things in order to LIVE!), not much chance to sleep because nurses and techs were coming in and out constantly (couldn't be there when you needed them but the minute you tried to sleep they wouldn't go away!), and they just seemed in general clueless. I DID have one or two nurses that were nice and tried and I appreciate that.

I spent my days reading, talking on the phone, listening to the old biddy next door's TV because she had it up full blast, walked a few times, listened to a little music, wrote some, and ate like a horse for two days straight! LOL

Anyway- as far as the surgery went they took out my entire thyroid, supposedly all of the lymph nodes in my neck and shoulders, supposedly two of my parathyroid, and even found a fifth parathyroid away from the others that was hiding behind some lymph nodes. There was also something said about a tumor on that one but I'm not sure what went on with that. Also it seems the tumor was reimplanted into my forearm which I don't understand either.

Dr BC did much better this time in that he came by to check on me each day, took time to talk to me, and tried to make sure I got what I needed. I'm very appreciative that he seemed to take me more seriously this time.

I was in the hospital from the 2nd until the 6th when I was finally allowed to go home because my calcium levels were doing well. They supposedly did a calcitonin test so we should get to find out how much my levels have gone down now that I've had the surgery. I'm anxious to know what they are.

Also, I'm saying supposedly so much because no one has completely told me for sure what was done yet. I hope to get some answers soon though because I'd really like to know what went on with my body. :( MUCH more happened after I left the hospital but I'll save that for the next post.