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Rollercoaster ride March 22, 2014

Posted by Judy in Musings.
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Nothing is ever simple with me. I’m always the “interesting” case. After my experiences of the past two days, I’m quite ready to let someone else be the “interesting” case and to just be a plain, old, boring patient. Thankfully, it looks like I’m headed in that direction.

My roller coaster of an experience started when my alarm went off at 4:45 am on the 20th. I had to be at the hospital at 5:30 for a 7:30 am surgery. The intake nurse was quite nice and chatty, so that was a good beginning to the day. I asked her to not take my blood pressure in the left arm since I’ve had lymph nodes removed, so she gave me a limb alert bracelet, that way every other person would know that limb was off limits. Everyone has ended up taking my blood pressure in my leg, which was new and weird!

limb alert

Anyway, she felt really bad having to start an IV without using any numbing medication (allergic to Lidocaine). It could have gone really poorly for me given that my vein kept trying to roll and she was having a hard time wrangling it. But, as a testament to her skill, she managed to get the IV started without causing me mass amounts of pain. Hooray, for skillful nurses! The anesthesiologist came by around 7:30 and we discussed airway management. The pre-op doctor put a note in my chart that I was interested in an LMA, so the anesthesiologist was prepped for that discussion. Her feeling was that this surgery would be longer, so she was more worried about doing an LMA since there was an increased chance of throat secretions ending up in the lungs, and so her preference was to do the endotracheal intubation, with a smaller tube. I was comfortable with that once I knew that she understood the importance I placed on my vocal cords.

About 15 minutes later, the OR nurses came to get me and wheeled me back to the surgical suite. (Sounds luxurious, right?!) I didn’t notice much as I was being wheeled back the first time I went in for surgery (the lumpectomy), because I was busy chitchatting. This time, I noticed the smell. The instant we went into the surgical/sterile wing, the smell was very clean, almost like a bleach type smell. When we entered the actually operating room, it was FREEZING! Yikes! The nurses had warned me, but this was way more extreme than what I was expecting. Fortunately, they gave me several heated blankets and that kept me nice and toasty.

My reaction upon entering the room was MUCH calmer this time. I actually noticed everything and everyone around me. I managed to wave and flash a big smile to the resident doctor and the nurse. I said “hello” to the CRNA (certified registered nurse anesthetist), then I wanted to verify that she had the same info as the anesthesiologist. To my surprise, she said, “Yes, we’ll be using the LMA.” Uh, what?!?!? I wasn’t complaining, mind you, just pleasantly surprised. So yes, no tubes for me, and that made me VERY happy! I also mentioned that I didn’t want Morphine, as I didn’t tolerate it well during the last surgery, nor did I want Versed. She agreed to all of that, then they set me up on the super narrow surgical bed. (I still can’t get over how narrow those crazy things are!!) Next came the pain meds through the IV (fentanyl) and then the mask for oxygen which eventually was switched to a gas that put me to sleep. This time, I was determined to be aware and cognizant as long as possible. I didn’t make it that long before I just wanted to close my eyes and sleep, though!

I woke up sometime later in the recovery room and heard the nurse saying something about “set up the morphine pump.” That woke me right up.
“Excuse me, I had requested to not be given any morphine. Could we please discontinue this?”
The nurse apologized and immediately stopped the morphine and switched me to fentanyl. I then got some ice chips and then realized that I was shivering, so they gave me a bunch of blankets. I must’ve fallen back asleep, because I don’t remember being wheeled from recovery to my hospital room. Hubs met me at the room a few minutes after I arrived at around noon. He said that Dr. Ray had reported that everything had gone well. It would be 24 hours before the port could be used, but there were no surprises.

So all in all, it went fine.

“What?” you say. “That’s it? Where’s the rollercoaster?”
Here is where the storytelling gets tricky. The previous section of the story all took place and was stored in a nice, orderly fashion in my brain. The rest of the story is a jumbled mess and I’m not really clear on what happened when. So I thought it best to separate the events by category rather than trying to tell them in a chronological order. I’m sure the fogginess of my brain was directly related to the pain medication. So, let’s start there.

NARCOTICS
The bottom line is this, I should never, ever become a drug addict. I would be a terrible one: always falling asleep, throwing up, feeling totally off. Well, maybe that’s the way you are supposed to feel, but I can’t imagine why one would want to do this to themselves on purpose as it’s not a pleasant feeling for me.

In the words of the surgeon, I had a very “marked reaction” to the narcotics. Basically, it made it so that I couldn’t keep any food down. Now I have to say, throwing up is my least favorite thing to do. There are so many other unpleasant experiences I’d rather endure rather than vomiting. When you accompany that with diaphoresis (sudden and profuse sweating) and weakness, you get a miserable time. This happened to me three times between 4 and 11pm. At first I thought it was just that I had tried to eat too soon. I have been NPO since midnight, so I was hungry and ordered rice and lasagna. The rice was too dry and one bite of lasagna proved to be too much. Shortly after that, the first upchucking took place. It was so violent, I actually expected it to come out my nose at the same time. Yuck! Not fun! (Remember this part for a future story about the residents.) But, once the event had passed, I felt fine, as if nothing bad had happened. The nurse gave me a medication called Fenergan which is an anti-emitic. Within a few minutes of being given that intravenously, I was so, utterly exhausted. I took a little nap for an hour or so.

After a few hours of feeling decent, I tried food again. This time I ate some Korean dumplings DH had brought me, as well as a veggie burger and a popsicle. I figured I was safe since I didn’t feel nauseated after just one bite. DH came back from having gone home to eat and put the kids to bed. He helped me up to the bathroom and then I figured I should try to go on another walk around the floor. (I had done a half lap about an hour after arriving.) We started to go and then it started creeping up on me: the diaphoresis and the weakness and then the “oh no! I’m going to lose it!” We managed to get back to the bed where I felt horrid, was breathing super fast and wishing this feeling would just go away. And then I threw up for the second time, which was equally as violent as the first time. But again, once the event passed, I felt better. Since the first medication didn’t seem to be working, they gave me another anti-emitic called Zofran. Another hour or two passed during which time I didn’t eat any food and only drank water. I thought I was in the clear, and then the diaphoresis kicked in followed by the other symptoms. I didn’t think it was possible to have a more violent vomiting episode. I was so very wrong! I felt sorry for my roommate, having to listen to me wretch away. And really, wretch is the best word to describe it. I was gasping for air, coughing, and trying desperately to not choke on my own vomit. (Sorry, I know that’s gross!)

Up until this point, I had been using the PCA pump for pain meds. The meds are hooked up to a pump with a button that I could press every 10 minutes for pain relief. At this point, since neither of the anti-emetic medications seemed to be working, I realized that the culprit must be the pain meds. Hence, I quit using them for the rest of the night. Wouldn’t you know it, I quit throwing up. So again, the moral of the story, I’d be a terrible druggie!

COMPLICATIONS
Somewhere along 4:30 pm on the 20th, I happened to glance down at my dressing and chest and did a double take. I had cleavage! Does anyone else see a problem with that? Yeah, I thought that cleavage was now a thing of the past. So I took a closer look and discovered a giant lump, maybe a bit larger than a clementine, on the right side of my chest. I called the nurse and she said, “Hmmm, that doesn’t look right! Let me talk to the doctor.” A few minutes later, one of the residents came in and took a look, also proclaiming that she didn’t like the looks and she would need to talk to Dr. Ray. His opinion was that it could be a hematoma (collection of blood outside of the blood vessels) forming and he might need to do another surgery to remedy that. In the meantime, I was to apply heavy pressure to the area. To that end, the nurses applied a pressure fitting bandage so that the downward pressure would hopefully help the hematoma to resolve. They also brought me two water-filled IV bags wrapped in a towel and set that on the swollen part. And no, it did not feel good!

Dr. Ray came in to see me the next morning around 8am. His first words were, “I’m sorry you had such a crappy night!” He went on to say that this was definitely not a foreseen situation. Based on what he had seen at the end of my surgery, there were no indications that I would develop a hematoma. By this time, the swelling had gone down significantly, but he was still able to feel something there. His main concern was that the hematoma was surrounding the port and he didn’t want to risk any future complications. So back to the OR I went. It actually took about 3 hours for me to get there, but I did get taken down to the surgery center where I was actually able to get in two long naps, which is much more than I can say for being on the 7th floor, what with the hourly interruptions!

Again, I had a very accommodating CRNA who used an LMA, did not use morphine and made a note that I wanted neither morphine nor fentanyl in the recovery room. She had to use fentanyl during the surgery, it was either that or no pain control. While I have a really high pain tolerance, surgery without pain meds would be nuts. To help with the nausea, she loaded me up with Zofran and something else whose name has escaped my mind. I was also pleased to see the same nurse that was with me during the lumpectomy. The surgery was supposed to be a quick 20 minutes, but ended up being more like an hour or so. He didn’t find anything obviously causing the leak, so it took him longer to redevelop a plan and finish up the surgery. All in all, it was successful since I no longer have cleavage . . .hooray! (Who ever thought I would be cheering about that?!!)

RESIDENTS
I’m at a teaching hospital, which means that there are many med students and residents that are involved in the care of patients here. Sadly, not all of those interactions have been positive. The first resident I encountered was in the operating room, and I saw her again later the same day when she came to check on me. She was lovely, just lovely. The next two residents crossed my path the afternoon of the first surgery. Remember that first upchucking episode? Yep, that’s when they came in. I recall seeing the male and immediately thought, “Well hello, Mr. Know-it-all!” He just exuded that attitude. He stood with his hands not on his hips, but in the much more aloof BELOW the hip position, and he was wearing a fleece jacket with the name of the hospital and the local Big 10 team logo, as well as his name embroidered on the front. Apparently, he was way too cool to wear a white lab coat! (And yes, I did manage to notice all of this mid violent vomiting. Talented, I know!)

Anyhow, DH said that while I was otherwise unavailable, the two residents (there was Mr. KIA and a female resident) were moving towards me wanting to examine the surgical site. DH basically told them to go take a hike and come back later. They both left in a huff. Excuse me for puking and ruining your day! (Insert giant eye roll!) I had the misfortune of dealing with both of the residents the following day. But before that, two other residents stopped by separately during the night and early morning. They both were great, very thorough in their explanations and gentle in their approach. The whole mob of residents descended on me at about seven, and here is where the two residents from the deep reared their ugly heads again. The female came over and wanted to examine the surgical site, and was flummoxed when she saw the giant toga-like pressure bandage that the night nurses had place on me.

toga dressing

After yanking on the binder (remember that sexy thing from the lumpectomy?) and making me rather uncomfortable she says, ”Uh, we are going to have to cut this!”

“Actually, you can unravel it enough to be able to see the surgical site.”

”No, I think it’ll need to be cut, we won’t be able to see anything.”

”Well, SHE managed to do it earlier this morning” I said as I pointed to the resident that had been with me in surgery. (As an aside, why is it that so many health professionals treat you as if you have no idea! I don’t know how many times I’ve said something to assist with my care, the “professional” blows me off, then ends up doing what I suggested! So aggravating!)

So the good resident helped the other resident and it was all well and good, until Mr. KIA struck again. He leaned in and started poking and prodding away, with his bare hands. DH immediately asked if he had cleaned his hands, to which he huffily replied “I wash them in between each patient.” Well, that’s great, but how was I to know that? And how do I know you didn’t touch the wall or the bed or some other contaminated thing before shoving your hands into my surgical site? Grrr!

Suffice it to say that we didn’t have much appreciation for the residents as a whole and mentioned it to the surgeon who promptly asked us to remember the incidents and share them with him in detail at our follow up visit. In the meantime, he banned Mr. KIA from dealing with me. Funny thing is that we didn’t even say his name, but the surgeon knew right away who we were talking about! I was out for a walk around the unit after Mr. KIA had been banned and I happened to see him in the hall . . .. he seemed all awkward and walked stiffly past me. I was amused. Maybe I shouldn’t have been, but I was!

CHALLENGING
As I was finishing up this post, I had another “Holy cow, really?” experience, this time with the nurses. I noticed that my wrist was getting swollen and I’d also noticed a little blood just around my IV. This didn’t seem like a good development. The nurse came in and he determined that it was likely okay, but was going to change the dressing. During the course of that jostling, the IV was compromised, so he had to remove it and he sent in his charge nurse to insert the IV. Because of the swelling at my wrist, she had to insert the IV in the crook of my elbow. She puts her gloves on, then puts her hair in a ponytail. Now maybe this isn’t an unsafe practice, but DH didn’t appreciate it so he made some snide comment, which prompted her to change her gloves. Then she cleaned the area with alcohol, rubbed with the glove to check the vein, then proceeded to tear one part of the glove off to feel with her finger. So she’s tapping the vein with her bare finger. Now, I realize that I only made it through two semesters of nursing school, but we were taught that when you are doing anything with needles, you don’t want to touch the patient’s skin with your own skin. I didn’t think the nurse’s actions were particularly safe, but didn’t say anything. She then proceeds to insert the needle and dig around such that she blows the vein. Whoops! As she is getting ready to try again, I ask her about the “tearing the glove” bit.

Her response “The gloves are really there to protect me from the patients and their bodily fluids.”

“Okay. So then it’s not a problem for you to touch my skin with your bare hand? And if that’s no biggie, why bother with the gloves anyway?”

“Well, it helps me to better feel the vein, and if I do touch, I”ll wipe the skin again. (She actually didn’t do this last time, so my confidence in her words was low.) But I can put on new gloves if you’d like.”

“Yes, please.”

And then I got blown vein number two. There must be this rule that after two attempts, you get someone else to try, because after apologizing profusely, she went off to find someone else to try to start an IV.

As I was waiting, I decided that a) I was going to refuse the medication they were wanting to give through the IV (Pepcid, my stomach was fine, I didn’t need it anymore.) and b) I wanted to know if I really needed the fluids from the IV anyway. I was drinking lots of water and was plenty hydrated. The upshot of the matter is that I got them to call the resident on call who agreed to leave the IV out so long as I stayed hydrated.

And now, for the moral of this very long tale: You MUST advocate for yourself. Seriously, friends. Most people out there aren’t going to do it for you. You MUST speak up when you have a question or something makes you uncomfortable. Just because someone has a MD or RN on their name badge doesn’t mean that they are infallible or that they are making the right decisions. And most importantly, don’t feel bad or apologize for your advocacy. You owe it to yourself!

SURPRISES
And finally, a little surprise popped up last week and I didn’t have all of the info until recently to be able to share. I’ll attempt to be brief, no promises, though =)
I had an echocardiogram done last Friday to make sure my heart was working fine and to have a baseline since one of the chemo drugs I’d be getting is cardio toxic. During my pre-op physical on Monday, the doctor shared informed me that test results showed that the ejection fraction of the left ventricle was borderline low. This means that it’s not squeezing hard enough. My rate is 48% and normal is 55-65%. I did a follow up EKG (measuring the electrical activity of the heart) which was totally normal, and then I had a stress test (echocardiogram followed by 6 minutes of treadmill walking to get the heart rate up to 155bpm followed by another echo), which also came back normal. So, if I wasn’t going to be getting chemo, this little zinger probably wouldn’t matter. But, I’m guessing I probably don’t want to blast my heart when it’s already working suboptimally. *sigh*
I’m choosing to not worry about that for now since chemo is 4 weeks away. Today, my focus will be on getting rest and being discharged from the hospital.

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Comments»

1. Shannon Morber - March 22, 2014

Dear Perla–my heart is heavy for all the “downs” of this experience for you but *thrilled* to hear both you and your husband are advocating so fiercely for yourselves! Sometimes, we’re intimidated by the hospital or mistakenly ignore our own gut voices, but we possess instincts and intellect for a reason. May the remainder of your time there be more pleasant and complication-free!

2. r - March 23, 2014

Wow, rollercoaster is right! Cheers to you for advocating effectively for yourself and getting through both surgeries with aplomb. Sending loads of good thoughts for a quick recovery your way!


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