Thursday, May 27, 2010

Be Your Own Advocate

After six days as an inpatient and a total of over a month spent in the hospital this spring alone, I can't express how much I appreciate a good nurse – and maybe even more so – a good PCA. But even with the best care, it's so important for anyone who has to go through this to know how vital it is to be your own advocate and to have a full understanding of the care that you are supposed to receiving, the drugs you are supposed to be getting, when you are supposed to be getting them, and keeping track of your symptoms. You must pay attention.

I consider myself to be a pretty intelligent person and the journalist in me prompts lots of question asking and fact gathering. Every single day I've been here my heart aches for cancer patients for which English is their second language or who just can't wrap their head around all the medical terms or who just zone out and leave it to the nurses and doctors to handle. I can empathize with why other patients may be like that ... they don't want to know what's going on, they just want to close their eyes and get through it because it can be really, really overwhelming, but that does not work for my personality. And I'd venture to say that that's the case for most other young adults in my situation. I have caught so many near mistakes and told so many nurses how to do things that it's quite scary.

To be fair, I realize that no one knows my individual medical case nor my body better than I do and I've been watching people treat it and care for it for more than a year now. But I did not go to nursing school and I don't deal with patients all day every day. I do not comprehend how those that do still cannot draw blood, work on a cancer floor and can't change my port dressing or don't know tricks to get blood from my port if it is being finicky. I just spent 20 minutes with the nurse who couldn't get more than a little blood. She had no idea how to problem solve. I told her that when it happened in the clinic once they had me breathe, cough, lie very far back, put my arm up and I walked her through each of those things to try.

This is the longest stretch that I've ever been in the hospital and unlike just getting chemo which requires action for only about five hours of the day, I require a lot more work and obviously the lazy nurses do not like that. I had contact precautions instituted meaning that anyone that comes in needs to put on a gown, gloves and a mask first. The number of people checking on me reduced dramatically. I never even met my evening PCA and my night one has checked my vital signs once despite the fact that they are supposed to be monitoring my incessant fevers so closely. When I ask the nurse again if he would be coming around to check I hear that he is "rounding" ... well I am "burning up."

The dinner delivery person apparently didn't want to deal with putting those precautions on either. After 90 minutes passed from the time of my order and my food still had not come I called up front and the nurse dispatcher person said she would check if it was in the communal kitchen area. Didn't hear back for another half hour. Called again. She said she was sending my PCA to go look. Finally he comes in with the tray which was salmon and rice and says he found it in the nourishment room. I had been delivered at 6pm and therefore had been sitting there at room temperature for two hours. He told me that he microwaved it for me so hopefully it's hot enough. Are you fucking kidding me, I thought? I'm neutropenic, on a low-bacteria diet and I'm going to eat a tray of food that has been sitting out for two hours? And you can't tell me that no one ever walked by that tray. The "not my patient" or "not my job" attitude is ridiculous. So I ended up with pasta on a styrofoam plate at 9pm.

Some nurses will leave wrappers and caps from syringes and bloodied alcohol wipes on the bed and I'll find them in the sheets. The other day I had to wait hours for someone to come and change my bedding. I was so tired and wanted to take a nap but my sheet was covered in blood from the massacre that went down when – God forbid – they had to take blood from my arm.

I had to force one nurse to go look back at the orders when she did not believe me that it is protocol to give Tylenol and Benadryl before a blood transfusion. After she checked the computer she came back in with a Bendaryl pill for me and didn't say a word. I've broken out in hives from platelets every time even with Benadryl beforehand and had to get more during ... can you imagine what would happen if I didn't speak up?

And the absolute worst is the "shift change void." If you need something between 6:30 and 8 a.m., 2:30-4pm, or THE worst, 6:30-8pm, you're screwed. The worst was Tuesday night when at about 6:30 violent, shaking chills came on. Again, my sheets had not been changed and were sweat-soaked from breaking fevers the night before so I was sitting up on the couch wrapped in a blanket uncontrollably shaking, my teeth chattering. I knew a fever was coming on and I knew that Tylenol would stop the chills. This is what has been happening every four hours.

I called for the nurse, told the dispatcher person what was happening and she said, I quote: "Well, it's shift change ... I'll see what I can do." Half hour goes by, no one comes. The chills are more overtaking. I call again, say that I am spiking a fever, that I need Tylenol. Again, "It's changing of the guards" and some babble and as I continue to protest she just hangs up. Craig goes out in the hall to find someone, anyone. The nurse he talks to says "oh, I thought I took her vitals before ... ", mumbles something else, her phone rings, she takes the call and literally just walks away from him. Ninety minutes later my night nurse comes in and at this point I am in tears explaining to her what happened. She said she came in as soon as she arrived, which I knew was true as she is a fantastic nurse who I was lucky to have for several nights. My temperature had risen all the way to 103. She already had Tylenol in hand and gave it to me immediately. Apparently when the afternoon nurses are done, you are dead to them.

To counteract the frustrating caregivers, I have also had some phenomenal, phenomenal nurses and PCAs that have gone far above and beyond. They've been efficient, proactive, anticipate my needs and are right on top of things. You can tell that they generally care and that they are in this profession to help people.

And when you get a good nurse and PCA at the same time that work as a team, it's heaven. The past three nights my duo has been amazing. They would coordinate so that when the nurse came in to draw labs or to change over meds the PCA would come at the same time and do my vitals so that I wouldn't be woken up twice. They brought fresh ice water without me having to ask and checked if my hat was full every single time. I tell you there is nothing worse than overflowing your own pungent antibiotic laden urine over and over until they decide to come empty the hat that I have to pee in every time.

It makes all the difference in the world when you are treated with respect and kindness, when the nurse walks you through the care plan for their shift, when they tell you what is happening with your bloodwork, what you can expect to happen next, when they check in just to see if you might need anything, and when they spend the time to talk to you, show compassion, get to know you. Compassion is the big thing and you know if they have it or not within the first 15 minutes. Some are just going through the motions but some make it their mission every shift to be sure that you are as comfortable and as cared for as possible because they understand what you are going through is pretty close to hell. A smile, laugh and a gentle touch on the arm go a long, long, long way.

I have also been more than impressed with the oncologists, hematologists, residents, fellows and interns working on my case. They are all at once extremely intelligent and extremely caring and do such a good job at making something as abstract as a stem cell transplant understandable.

I suppose that there are individuals who are outstanding, so-so, and terrible at their jobs in every profession, but in this one it's lives, not printer cartridges that are at stake. Even in my most frustrated moments I maintain my devotion to the "kill 'em with kindness" method. There are ways to stand up for yourself without snipping and bitching at people. And the reality is that like them or not, that is the person that is going to be caring for you often times for the next 12 hours and when you need something you don't want to be the patient they ignore. Plus, they're the one wielding the needle.

When I'm appalled at a transporter pushing me on a stretcher to x-ray and groaning about how long of a day it's been for him or a nurse telling me how eager she is to get out in two hours I constantly go back to the Plato quote: "Be kind, for everyone you meet is fighting a hard battle," but sometimes it's hard to swallow people's insensitiveness. I'm pretty sure that at this moment in my life my battle is probably at least on par with whatever one they are fighting that's making them drag their feet and moan in gloom.


  1. thats my girl- we have reached the summitt and we are starting to feel better again- blogging has got to be such a great release for you and I am so proud of your honesty- being a nurse I hate to hear about the "not so good ones" in my profession hopefully your honesty in your blog and in your satisfaction survey will help these nurses and other cancer patients to come.

  2. It makes me sad that patients in need have negative experiences with the nursing staff. So far I have been lucky with minimal bad experiences. I'm able to manage my care, but worry about the time when I can't...........

  3. Wow, i get mad enough at the grocery store when the cashier tells me how tired she or he is or completly ingnores me to talk about the party last night with the person bagging. And I worry about my squashed bread and bananas! But to hear this lazieness and disrespect goes on in a hospital where your life depends on their care!! So disturbing! I agree that your life battle trumps! Remember the quote from your Peppe and the title of your blog. Maybe this is also what he was talking about. Lynn