More problems with medical care.
All is well with the transplant - which is the most important thing. The physicians are the best in the world at transplant, and I am grateful for this. But a patient is more than his disease, and that's what seems to be problematic.
Ryan's persistent symptom since his diagnosis (and actually part of what led to his diagnosis) - has been severe headaches. He has no history of headaches prior to March of this year, even after a significant head injury and concussion in July 2011 due to bicycle accident while he wasn't wearing a helmet.
There are lots of reasons for his headaches:
-severe anemia from his tumor added to living at a high altitude in Utah
-multiple spinal taps and instilling chemo into his cerebrospinal fluid
-a known side-effect of Zofran, a very effective anti-nausea drugs (used to treat the nausea side-effects of the chemo)
-brain irradiation
-sleep deprivation
-stress / anxiety
In teaching hospitals, most of the general care of patients falls to the residents. These are physicians who have completed medical school and are in training in their chosen specialty. They "rotate" onto various clinical services in the hospital, getting exposure and training in various diseases and clinical specialties and learning from a variety of "attendings" physicians - those who are board certified in their specialty and are in teaching positions while they care for patients. Interns are in their first year of residency. At this point, the interns (who graduated in June) are in their fourth month of training and quite inexperienced.
Yesterday evening, a resident asked Ryan if tylenol had ever worked for his headaches. For the milder ones: Yes. So he encouraged Ryan to use only tylenol for 24 hours and see if that worked. Ryan agreed, and the resident promptly cancelled the orders for all other pain meds.
Smart move!! - change an order for medication which has been working when you won't be readily available to fix it if it doesn't work. (Rule number one of medical order writing: don't make unnecessary order changes in the afternoon before you go home...).
Needless to say, Ryan got a severe headache in the wee hours of the morning. The nurse got an order for an oral medication which Ryan promptly threw up - but because she "couldn't see the pill" in what he threw up, she told him he couldn't have anytihng more for 4 hours. Just because a pill isn't visible, doesn't mean that it has gotten absorbed into the blood steam and has reached adequate tissue levels to be effective!! Arghhhh.............
A new nurse came on at change of shift and tried for several hours to reach the resident for an order for something IV without success. I called Ryan about this time and he was extremely frustrated and just about in tears from the pain. So I called and talked to his nurse (who, by the way is wonderful!!). He confirmed what Ryan had told me and that he had been unsuccessful in reaching a resident for several hours, he had just gotten a response minutes before I called, but it wasn't going to do Ryan any good.
Knowing from the nurse's voice that he was as frustrated as we were, I asked what had been ordered. Morphine 1 mg IV. An absolutely worthless dosage! I asked who on earth had ordered that. The intern.
Now I'm ballistic.
Luckily for me (and unluckily for her), when I was speaking with Ryan a few minutes later the whole team came into his room. I told Ryan to hand the phone to the attending and let's say I "shared my concerns". She got the full force of all my frustrations with the lack of communication, indifference on the part of residents, interns who are clueless writing orders without apparent supervision, etc, etc, etc.
I asked if there was a concern that Ryan was using to much narcotics - the answer: an emphatic "No". "Then why are we playing these power games of withholding pain medication?!"
I demanded that the attending put a note with her signature on the front of his chart stating that I was to be called and informed of any order changes. Sounds crazy, but how many times do I need to struggle to get orders for adequate pain relief only to have some resident with a narcotic phobia change the order?!
While I was talking to the attending (or was I yelling?), Ryan had a discussion with all the housestaff (residents & interns) - telling them that they were about his age, asking them how they thought it felt to being facing what he's facing, how they would feel to be kept in a single room for a month, completely dependent on others for every little thing, completely at the mercy of them for pain relief. How they would feel if they were in pain for hours and those responsible for their care withheld pain meds and didn't return nurse's calls. They were silent and sheepish.
It'll be a miracle if I don't either have an ulcer or get arrested for assault before this is over.
Interesting observation: The hardest place in the USA to get narcotics is in a hospital. I could go to most any street corner in any city in the US and get narcotics more easily that Ryan can in one of the best hospitals in the country.
---Barb
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