PixelRN

It’s a beautiful sunny day. I’m working nights and I can’t sleep. There’s an ice cream truck outside playing a continuous loop of “Pop goes the weasel.”

May as well blog.

I’ve had a frustrating experience lately with being the patient rather than the nurse. The good news is that my health benefits now entitle me to start IVF (In Vitro Fertilization). The bad news is that IVF is no picnic.

At first I was excited, optimistic. I decided to approach the whole ordeal with a scientific zeal. How fascinating to participate in such a technologically advanced procedure! I remember hearing the term “test tube baby” back in the early eighties as a child and regarding it as very fururistic and science fiction-y. Fast forward to over 25 years later and now I actually participating in this groundbreaking science!

Then I learned about the amount of pelvic ultrasounds I would need to undergo in a two week span, and the amount of sub q shots I would be giving myself. My scientific bubble has burst.

I should be excited. One of the members of the reproductive endocrinology team that I will be seeing actually worked with the first couple to produce a test tube baby in 1978! The problem is that when you are seeing the "best doctors in the history of all time", customer service can be a little sketchy.

First there was the issue of getting my medical records from my OB-GYN. I emailed her well ahead of time to tell her what records I would need, and what date I would need them by. She quickly replied and said she would have the nurse get everything together for me to pick up, and that to make sure I came back when I was pregnant. So the day before the appointment I started calling the office to confirm that everything was in order. Calling my GYN’s office and trying to speak with anyone except the receptionist is kind of like picking up the phone and dialing the President of the United States. I asked for the nurse to call me back to let me know if the records were ready. She did not return my call. I called several more times and did not get an answer from anyone. So I showed up in person. You would have thought I showed up at the Library of Congress, demanding to see classified records.

“You can’t just show up here and expect to get your records. That could take weeks!”

“What do you need them for anyway?” (So much for patient privacy.)

I was told by the nurse to fill out a form and take a seat. She was very dismissive and made it clear that she was busy seeing patients, and she wasn’t sure if she was going to be able to fulfill my request.

I finally managed to convey to someone that I had arranged with the doctor ahead of time to get my medical records together. The nurse told me to come back at the end of the day and she would have everything ready.

I walked away in amazement. I was nothing but polite and tried to be straightforward about what I wanted. They acted as though I was asking for something outrageous.

I can’t imagine treating a patient like that.

Afterwards, I took a moment to look over the records. Apparently a previous pelvic ultrasound showed that I had cyst that appeared to be taking up all the space in my right ovary.

Interesting. I had no idea what this means, and was surprised to see that it’s there.

The next day I arrive for the infertility workup. I tell the doctor my story. He agrees with me that because of my age (35) and because my infertility is idiopathic (meaning a cause cannot be determined), IVF is the way to go. And today just happens to be day 1 of my period which means we can start the process immediately. He does another ultrasound and again finds that big old cyst in my right ovary. I ask him what this means and he says we’ll talk about it back in the office. So we go to the office and he says that he suspects that it is an endometrioma. But because he can’t be entirely sure he is going to order a CA 125 level.  He says it’s nothing to be too concerned about. He also tells me that the CA 125 can generate a lot of false positives so don’t  put too much stock in the results.

I know this is true. But in my head I’m just hearing the phrase “cancer antigen! cancer antigen! cancer antigen!” and I know I won’t relax until I see the result.

He tells me I can have laparascopic surgery to investigate and remove the cyst, or we can go ahead with the IVF.

I choose option 2. But I’m wondering why my previous doctor ordered a pelvic ultra sound and never told me about the cyst. I remember calling her to ask her what the results were and she said, “The results are negative.”

Later on I check my blood results. No Ca 125 level. He must have forgotten to order it. This drives me crazy. If he thought it was important enough to mention to me, then why did he forget to order it?

And now onto the treatment plan. He mentioned a couple different protocols, one involving birth control pills and a drug called Lupron. He told me to start the BCPs immediately and was vague about what to do next. Then he introduced me to the IVF nurse, who signed me up for an orientation class. I had a lot of questions about the Lupron and the BCPs but was told that these would all be answered at the class.

So I show up at the class ask these questions to another IVF nurse. I am told that the answers should be in the treatment plan that my doctor ordered for me. Treatment plan? He said start taking these BCPs and be on your way. How long do I take them? Do I take the placebos? What about the Lupron? When do I start that? I was told to call the office on Friday when the doctor would be available to make this information known. I called and the nurse looked at my plan. It said: “Start IVF immediately. Start BCPs.” And that’s it.  Unfortunately the doctor was not in so I was told to wait until Monday to further clarify this.

By Monday I'm on the phone with the nurse to clarify my treatment plan. She told me when to start Lupron and at what dose. When I went to pick up the lupron at the pharmacy, I was hoping for a written prescription to confirm this. It just said, “Lupron. Take as ordered.”

So who, exactly, is running the show? Is it normal for a doctor to casually mention that he will probably put me on this treatment plan and then it is up to me, the patient, to actually ensure that this happens? I thought it was supposed to be the other way around. Is it normal for a nurse to transcribe a prescription to the patient over the phone, with no written record of the prescription?

And then there’s the cyst. I mentioned to the IVF nurse that the doc found this cyst and said he wanted a Ca 125 level, but I don’t believe this was ever ordered. She said, “A cyst? That just looks like a leftover corpeus luteum.” She stressed that she was not the doctor and of course we have to defer to him but…. She looks at those ultrasounds all the time. I said the Doctor was concerned enough to mention that he wanted a CA 125 level, so what am I to think? She said, “He calls everything a cyst.”

???WTF???

So this is GHOAT at its best.

I know that I'm part of the problem, though. Nurses are notorious for being difficult to care for because they scrutinize every little detail. To put it simply, we know too much. And you would expect a critical care nurse to be even worse. In my little insulated MICU world, we do everything a certain way. Every detail of every patient is constantly scrutinized and we have instant access to every piece of patient data  in the EPR....you mean other health systems aren't like that?

So I wonder what it’s like to be a patient who isn’t a nurse…

"Lupron? What lupron? I vaguely remember you mentioning it but since it was never mentioned again I’ll assume you don’t want me to take it. And since I don’t even know what CA 125 stands for, I don’t really care that you never checked it. Everything’s just peachy, and soon I'll be pregnant."

Ahhh. Ignorance truly is bliss. I won’t even get a pedicures anymore because I’m afraid of getting a MRSA infection on my foot. But that’s another blog entry.

I should be so lucky.

Time to by stock in companies that manufacter automatic defibrillators for the public.

I watched someone die this morning.

Ever since I started working in the MICU I’ve been curious about what a death looks like but ashamed to admit to this curiousity. I remember reading some time ago about a serial killer and how he murdered because he was so fascinated by looking into his victims eyes and watching that moment when the light goes out. Because of this I find it difficult to admit to anyone that I am curious about watching a person die.

But I am curious and I swear I’m not a serial killer.

So on to this patient. He was in the room next to my patient’s room. He was 81 years old with sepsis. He had tons of comorbidities, and a declining state of health over the past year requiring multiple hospitalizations. Now he was in the MICU, not really waking up, getting progressively worse. A family meeting was held and they decided that it would be best not to prolong the inevitable and to let him die in comfort. They had made the difficult decision of changing his status from a full code to a DNR and they decided it would be best to withdraw care.

But not until tomorrow.

I do understand why people choose to delay this withdrawal of care. It’s a great amount of pressure. You are probably feeling guilt and denial. You may have this feeling that by turning off the ventilator you are killing your own family member. You’ve come to the decision that it’s best for your loved one to go in peace…but not just yet. So the healthcare team then feels obligated to keep this person alive until the family is ready to withdraw.

But usually no one thinks about the when the patient is ready.

So last night this patient was trying to die. All night long, little runs of V-tach, blood pressure waxing and waning, agonal breathing. His nurse would watch these goings on and get that momentary sense of urgency… and then realize that there were really no measures that she could take. But she was so respectful of the family’s wishes, she was practically willing him to stay alive until the next day when the family would return.

Each little run of V-tach seemed to me like the patient was trying to take charge of his own death. The one thing the docs could do was make ventilator changes so they did that. It seemed to prolong the inevitable. Then right before change of shift, he lost his pressure. His heart rate started to fall. Even though his dopamine drip was increased his heartrate continued to fall.

He was determined. So his nurse was just kind of fussing over him. She kep cycling the pressure cuff and dopplered his pulse (for what?). I sat at the bedside computer and documented for her. I watched the monitor – heart rate 90s, then 80s then 70s. A couple of other nurses gathered round. We had been expecting this all night.

The agonal breathing became more steady (even though he was still being mechanically ventilated). I watched his face and saw a momentary grimace pass through every thirty seconds or so. It was strange because he was so unreactive before and now his face was showing something...pain, anguish?

As he bradied down to the 40’s …50’s, I was charting and the nurse next to me said, “Did anyone just feel a chill?” As she said it I realized that a chill had been vibrating through me for the last 10 seconds or so. As I became aware of this sensation, the chill was emanating, pulsating, prickling. Up until then I had been warm all night.

Then his heart stopped. We all entered the room and began cleaning it up, making it presentable for the family that was about to arrive. I checked myself. Did I still feel the chill? Nope. It was 100% gone. I felt kind of an empty feeling in my core, like something had vacated the space.

It was fascinating.

And as I read this I am amazed at my sense of detatchment. I just read Kim's entry about her patient who died on Easter. (Damn Kim- You always beat me to the punch!) She had the luxury of sitting around with the family and hearing stories about what a great and wonderful life this person had. In the MICU on nightshift, we are often just alone with the dying or comatose patient, not knowing much about who they were or what they were like. We keep them clean, hold their hands, try to provide a peaceful atmosphere. We are just maintaining status quo until the family can make it there. This can go on for days.

Thankfully, we are starting a new committee in the MICU, the "Quality of Death" committee. This will hopefully help us to better educate families (and ourselves) on how to best prepare for a loved one's imminent death. I can't think of a better place to start a committee like this.

I just submitted my link to nursingvoices.com and was sent this reply:

"We'd definitely love to have you, but are you planning on continuing to blog? I notice that you haven't written in almost three weeks and only twice in the last two months."

I read Emergiblog and am always amazed. Kim does such a great job of constantly updating her blog and everything she writes is so fresh, and funny and relevant. How on earth do you do it, Kim? And here I am calling experinced nurses like you a dinosaur! Shame on me.

Some possible explanations:

Take Geeknurse. He had a wonderful blog and he was apparently forced to shut it down by his institution (no doubt the GHOAT of New Zealand). I live in constant fear of this and so absolutely no one at work knows that I have a blog. But what this amounts to is that I am one heck of a lonely blogger. I feel like I have so many stories to tell about my unit and yet some of the people who would appreciate them the most (my coworkers) will never be graced with my creative meanderings.

I also live in constant fear of HIPPA regulations. The stories I would like to tell are so personal to the patient. And they are certainly not in a position for me to even ask permission to write about them (zoinked out on Fentanyl and Versed, or else in the throws of hepatic encephalopathy, you get the picture.) There are plenty of times when I would like to write about the family, and how they are dealing with the situation, but even then I never feel it is appropriate to ask.

Also, I kind of got hung up on the whole Grand Rounds thing. It just seems so MD-centric. I know, I know – if I actually contributed to it, then perhaps it would be more RN-centric, or at least more RN-ish. But, #1 I never seem to make the deadline, and #2 I once sent in a post on time and the host failed to include it for some unkown reason.

Excuses, excuses.

At any rate, I am hoping to find my motivation. It may have come in the form of a MICU survivor that I had the pleasure of meeting last week. It was at a MICU workshop I attended. She is a young woman who managed to be a patient in the MICU for a very long time (and was on every type of support we could offer) and made it out alive to tell her story. With her permission I am hoping to tell you her story in the following weeks.