Yet Another Update

[Guest guest]

Sorry to bore everyone with yet another installment of my " epic tragedy " . (I

think I'm doing better mentally because I feel okay to joke about it and not

start to cry uncontrollably.)

My wife developed an infection under a fentanyl patch and it turned

systemic. After days of fighting with her about it (plus calling her

father, the threat of calling an ambulance, promising not to let them admit her,

going to the ER of her choice [not the hellish one that I've discussed before]

and a small bribe) I finally convinced my wife to go to the ER! (On Sunday 4/1).

We waited in the waiting area LESS THAN FIVE MINUTES (my best estimate is 2-2.5

minutes). They took a swab of the secretions The CRNP and RN were patient,

kind, understanding, and helpful. My wife panicked when it came time for the IV,

but the nurse was patient and understanding about the entire thing and talked

her down and through it (she panicked when they told her they were doing blood

work and came in with an IV kit, bag of saline, and medication). They hung the

one liter (1000ml) bag of saline and the 100ml (0.1 liter) bag of saline plus

antibiotics. After the antibiotics finished, they disconnected the IV (first

time they EVER did that without forcing her to finish an IV).

My headache, which had been slowly growing since I woke up, got to the point

where I couldn't hide it any longer (I was only able to hide it because my wife

and her dad were focused on her). When my wife realized how bad my headache

really was, she tried to convince

me to get looked at while we were already at the hospital. Of course, I was

resistant. I told her that I just wanted to go home. By this point, I was no

longer able to choke back the tears, but I pulled myself back together (or so I

thought) by the time the nurse came in to discharge my wife.

The nurse realized something was wrong and then both my wife and the nurse

repetitively " asked " me to stay and get looked at. Not surprisingly, my wife got

her way. After the torture that was the exam/interview by the CRNP, she gave me

two options:

Option 1) Do a full neurological work-up, including imaging, and only God knows

what else. She told me to choose this option if there was any chance that this

headache was something new and not just more of the same

Option 2) Treat the headache as a breakthrough cancer pain episode (as a natural

progression of my illness). I was only to choose this if and only if I was

absolutely certain that this headache was nothing new.

Am I certain that the headache is nothing new? Absolutely not, but I wanted to

go home and I do have an MRI scheduled for 4/4, so I opted for pain management

over a neurological work up.

They called my Neurosurgeon (spoke to the on call doctor), gave me an IM dose of

Dilaudid, and immediately discharged me (I think they needed the room). I

started to feel better, until I started having side effects on the ride home.

Luckily, the side effects were relatively mild, but that did make me worry about

future pain management options if I can't utilize hydromorphone or morphine.

Doctors are scared to death of fentanyl, especially the oral products (Actiq,

Fentora, Onsolis, Lazanda, etc), because those a-holes at the FDA and DEA have

an issue with them.

You may be wondering why I consider this experience to be the least bit

positive. I went to the ER and got treated without a lecture on opioids and

without too much torture. While the ER is nothing close to a solution to the

4-6x/day pain spikes or the twice a week mind splitting headaches, but knowing

that there is even the slightest chance that a trip to the ER could mean a few

hours of relief is comforting. I'm also hoping that the ER trip will by some

miracle result in someone, anyone prescribing something effective for

breakthrough pain.

The ER told me to follow-up with my neurosurgeon within two days, but they

couldn't get me in until Thursday (seeing a PA, not my doctor).

Unfortunately, this means that I have my MRI on Wednesday, appointment with

Neurosurgery Thursday at 11am, and Medical Oncology Thursday at 2:40pm. It's

going to be a busy week.

Steve M in PA, age 22

Married with 4 year old daughter

" I know pain. You think you can handle it and one day you can't. And when that

happens, you either find reason to go on, or you don't. " -House MD