First Day at Home and the Importance of a Good Nurse

After leaving the hospital for my daily checkup, I was able to spend a solid nine hours at home. It will be a long while before I receive a day off from the VA, but I am so thankful to be an outpatient. Although I still spend half my day managing pain, I am left alone to sleep and nap when the pain subsides. Thankfully, I slept four hours straight last night and caught a three hour nap during the day. The hospital never would have allowed me to sleep for three hours during the duty day, but that's usually when I crash because of the steroid intervals.

I forgot to mention how my discharge came about. I do not know all the details, but from what I gather there were other patients who felt as though they were being held longer than necessary. Apparently one of the patients had a violent paroxysm of sorts and some of the nurses began to advocate for patient discharges. Thankfully, I had a terrific nurse that evening who spoke with the team and pushed for my release. A good nurse can really make a difference.

A good nurse will combine medications, vitals, and listen to the patient's concerns. An institutionalized nurse will be concerned with checking boxes and running through her routine without regarding your individual needs. Although I have had a few malicious nurses throughout my two years, most of the nurses, if poor, are not mean spirited. A poor nurse will usually do the following:

• Forgetting medication: This doesn't have to be pain medication; it can be any medication. When they forget, they cause the patient to lapse which can have several complications. If they forget periodic pain medication, the patient will then get behind on the pain and may not be able to catch up. I spent eight hours in agonizing pain once because my nurse just zoned out, chatting about her recent vacation, and didn't keep up with her job. Once the pain got out of control, she was unauthorized to issue anything stronger, it was 11 pm with no doctor on shift, and rather than paging someone, I got a lecture about controlled substances. The end result was 10 mg of oxy for a pain scale of 10/10. She then proceeded to whistle a tune and just keep chatting while I was on the floor. She was the perfect example of someone who was institutionalized and couldn't understand anything beyond a chart.
• Not grouping visits: Sick patients need rest, which is something that is hard to come by at the hospital. A good nurse will try to limit interruptions while others will stick to the book. If an IV needs to be hung at 21:00, vitals need to be given at 21:30, and something else must be done at 22:30, often times things can all get done in one shot at 22:00 or some other compromise. This is crucial because the policy is that vitals must be taken every four hours. That means that even if there are no other interruptions, the best you can get is four hours of sleep straight. But there is never a lack of interruptions in between.
• Become detached or apathetic; projecting an attitude that they don't want to be there: I realize that a job is a job. Even troops in combat relax their guard. As human beings we cannot be on 100 percent and for 100 percent of the time. I accept that, and I want my nurses to have a life outside my care. That being said, a good nurse will remember that her patient might be struggling just to live. Chatting or texting on your cell phone while the patient is near death really leaves a poor impression on the patient's mind. Especially when you then sigh and talk about wanting to go home from your shift.
• Just completely inept at the job: You see this in every field, but VA staff takes the cake on this sometimes. Don't get me wrong, most of my nurses deserve praise, and they are there to help the vets, but there is a large minority that just needs to go. The VA must begin to take performance seriously and start firing those that can't cut it. I had a nurse with 10 years of experience who consistently could not perform even the most basic task. At one point, I actually took the syringe from her hand and flushed my own PICC line. On another occasion, while I was vomiting bile uncontrollably she just sat there watching me and did nothing. Once I stopped,  I asked her what she was doing and she responded that she thought the color of my vomit was unique and that she wanted to see it change again from yellow to green. Seriously, I've met some very odd people who should not be in charge of a person's life.
• Floating to another ward without adjusting to the patient population: Most hospitals are short staffed and will have nurses from other units fill in from time to time. Generally speaking, those nurses will perform with the same level of professionalism and care as any of my regular nurses. However, sometimes, you'll get a "floater" who treats their cancer patient like they would treat a heroin addict in the ICU. In that case, you are fighting for adequate pain management. I have had nurses from a dementia or elderly ward try to severely limit my diet or food intake during their shift. I remember a time where after days of nausea and puking, I finally found my appetite. I grabbed some snacks that I kept in my room and began to chow down only to have my nurse confiscate the food until the doctor would approve. Of course this happened after hours and I had to wait while the nurse paged the attending physician to ask if I could eat.
• This one just deserves an honorable mention, but when my BK virus was at its worst and I urinated blood incessantly without relief, I received several of the following remarks, and mind you, the remarks came while I was on the floor and not some let's joke about this phase:
• "Well, now you know what women go through once a month." 
• "I always wanted to see a man get his period"
• "Now you know how it feels to give birth"
• Just be happy that you aren't throwing up; that hurts so much worse (from a female nurse)

Again, most of the staff is doing very well, and I'm just trying to share some experiences. I know there are some nurses that read this, and I know those nurses to be of the highest caliber. While the hospital will never be fun, a good nurse (like the ones I know) can make things manageable and build a rapport with their patients. I always ask who my nurse for the next shift is; depending on the answer, I either brace myself or relax and sigh a breath of relief. There's nothing like going through a period of intense pain and discovering that you now have 12 hours with Nurse Ratched.

As an aside, I need to do a whole separate entry on the BK virus and hashtag it for future patients. That deserves a very thorough account, and I'd say that half my female staff either didn't get it or they just didn't care. I am still dealing with BK and probably will be for another couple of weeks. However, I had learned to manage things in a certain way that helps flush the virus and mitigate incessant pain. For those who contract a serious case of BK, life is like pure, unadulterated torture for weeks on end. But because it's usually a secondary result of something primary and life threatening (GVHD in my case), physicians don't seem to focus on it and treatment takes a very long time.